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

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  • micmel
    micmel Member Posts: 10,055

    Rosie~That looks so comfortable and inviting with the fireplace and how you’ve decorated it. I love it! I’m sorry you’re irritated, but it is a big deal. Anything to deal with cancer to me is a big deal, because before we didn’t have to live this way. My back is a bear today. I didn’t nap yesterday, and I can feel it today. I don’t want to have to nap every single day like a baby in her crib. It’s just that one location in my spine.... the met.... arghhh!!!! So annoying. Thanks so much for sharing.....

  • mara51506
    mara51506 Member Posts: 6,482

    I love everybody's Christmas trees. They are lovely.

  • micmel
    micmel Member Posts: 10,055

    imageA lovely sight! They called for more but we got a generous dusting. I think it’s lovely un touched and walked in a lot. This is my backyard. My favorite tree.

  • simone60
    simone60 Member Posts: 952

    Rosie, that looks so cozy. I love where you put your tree.

    That is so beautiful Mel. I miss seeing the snow sometimes. I don't miss shovelling or driving in it though.

  • mara51506
    mara51506 Member Posts: 6,482

    That is very pretty scenery indeed Mel.

  • candy-678
    candy-678 Member Posts: 4,170

    Mae and Lynnwood- Enjoy early retirement. My early retirement (age 49) was official Dec 2. I will receive SSD starting in Jan. Been getting LTD from employer. I have been staying as busy as I want to be with volunteering, doc appts, grocery shopping, and maintaining my house. I get tired easily. I am glad I made the decision to retire. My career was done anyway with the cancer diagnosis. Everything changed with that diagnosis. Never to get my old life back. So now a new chapter.

  • micmel
    micmel Member Posts: 10,055

    Mae ~ Congrats on your retirement. Enjoy every second of it. Seriously! I know you already live life to the fullest but I just want you to be free to be you and never worry about working again. Just sharing times with your DH! I hope he finds the perfect camp ground. That was always so much fun. I loved to camp with DH. I just always missed my sound machine and fan and three pillows lol. (I was a bad camper) lol

  • micmel
    micmel Member Posts: 10,055

    Lynnwood~Congratulations to you too as well for your decision to retire as well. I hope that you find everyday has something you want to do. I sometimes get bored and don't even know what to do with myself. I am the type who can be alone just fine, but after a while I want to have some company. I have been thinking about volunteering some where with dogs! And or a shelter. Sounds like something for me. But then id want to take them all home with me. Congrats again. Relax and enjoy every second .

    Waving hello to Candy!!

  • micmel
    micmel Member Posts: 10,055

    imageI would never post anything close to this if it was serious. No way. I don't joke around with kids. But this was Funny! Darn it it didn't work I'll keep trying !! Grrrr

  • mara51506
    mara51506 Member Posts: 6,482

    I was worried about her legs too. Took me forever to see the bag of popcorn.


  • thisiknow
    thisiknow Member Posts: 88

    That's just amazing! HaHappy

  • micmel
    micmel Member Posts: 10,055

    Took a while for me to see it also But it fools the eye....

  • mara51506
    mara51506 Member Posts: 6,482

    Ugh, my apartment building changed the lightbulbs in the units. They are nice and bright but the colour temperature is way off. My kitchen looks like the doctors office flourescent lighting. Very bright white. I already swapped out the LED in the bathroom. Could not stand how bright it was. Bought 2-pin adapters and more LED lights that are bright but will give more of a yellow tone which is preferable. They should come tomorrow. Other than that, just have an appointment with RO. I already know my brain is stable but I don't like to cancel the appointment as I genuinely like her. Have done nothing else except laundry and cleaned myself up. My walking will be going to and from the bus stop.

  • runor
    runor Member Posts: 1,615

    Mara, you have struck upon a pet peeve of mine. The colour of light bulbs. For unknown reasons those bluish ones make my skin crawl. Make my jaw clench. Make my hands curl into fists. Make me start searching for the shotgun so that I can blast those damn bulbs out of the light sockets. When I go to someone's home who has those blue bulbs, my sense of distress just grows and grows until I have to leave. That blue light to me is extremely hostile and has an overall vicious effect on my nervous system. Hub shakes his head, like, who can be so affected by the colour of light, it's a trifling thing. Well, maybe for him, he's profoundly colour blind and wear a green sock and brown sock at the same time and has no idea. (not that it matters, I quit matching my socks years ago, I just fold two together, what happens, happens). But the effect is exactly like fingernails on a chalkboard. Get them to change those bulbs. That seems like a reasonable request to me!

  • mara51506
    mara51506 Member Posts: 6,482

    Runor, I agree wholeheartedly. I checked the bulb they put in the bathroom. It was 4000k which gives a very bluish light. Not nice at all. I have already ordered new bulbs and adapters for the kitchen light. Same wattage, LED but the colour temperature is not as high which should give a bright, more yellow light. If it does not, I'll use the adapter and put my own bulb in. I also agree with the effect it has. I put one of my bulbs in the bathroom and it is the perfect yellow colour. It is halogen so it still uses less power than the old lightbulbs. If the new LED bulbs are pleasing, I will swap out the halogen and keep as emergency bulbs. I need a yellow light, does not matter if really bright.

    I also agree with you about the nail on the blackboard feeling. The kitchen looks institutional. My RO office has more yellow light than I have. Not nice at all, when it was in the bathroom and I caught sight of myself, I looked like a corpse. Was terrible. I expect that in public bathrooms but not my house.

  • santabarbarian
    santabarbarian Member Posts: 2,311

    100% agree with light comments. They have to figure out a way to use pink glass or something to change it from "psychiatric ward" to "home."

  • sondraf
    sondraf Member Posts: 1,680

    Ohhher I just hate those lightbulbs. The only place with worse lighting that can truly make one look seriously awful is the bathroom on an airplane. It just makes my skin crawl as its so uninviting. Why can't we have warm light in our lives?

    Just dropping by to say hello to everyone *waves* . I love the photos of the trees and I will add ours after we get it decorated. I don't know how I am going to do on the expedition to GET the tree on Sunday, so it may be a few days into next week. We have this large owl decoration that really is scaled for a fireplace mantel that we don't have, but I prop him in there anyway even if he is about half the size of the tree.

    For the newly retired I say congrats! And general well wishes around as I know we have some ladies waiting for results.

    Did my two-week check in bloods (all good!) and then chatted with the MBC nurse for about a half hour. All the oncs are in San Antonio (Head Cheese is presenting) and she seemed a bit bored as there weren't any appointments scheduled. I could have gone home after the blood test but eh, Im so tired of being at home that sitting/working for a few hours in the fairly pleasant sitting room at the hospital was a nice change.

  • santabarbarian
    santabarbarian Member Posts: 2,311

    By the way when I was in my 20s I was a waitress at a classy bistro type restaurant. Best Light Ever. The light fixtures were sconces made by glass artist Dale Chihuly, made of pink glass with a swirly pattern The light in that place was insane. Everyone looked like they had dewy Brazilian supermodel skin in that light. Years younger, rosy-cheeked. I am sure women BEGGED to have dates there.

  • booboo1
    booboo1 Member Posts: 1,196

    Well, it looks like I’m off to the hairdresser again for another buzz cut. My onc took me off of PIQRAY and put me on Abraxane. Who needs hair anyway? I start on Dec. 23rd. Merry Christmas to me!

    I have seriously considered stopping treatment altogether, and letting Mother Nature do her thing. Onc said I still have many treatments left to try......they just don’t get it. I tried to explain that I’d rather have 2 really good years than 3 in bed sick all the time. She just looks at me like I’m demented.

    Just once I would like to see her go through what we do, even one treatment. Ugh

  • annc2019
    annc2019 Member Posts: 93

    Runor,

    The same thing happens to me especially when it is on a car. I am sensitive to lights and start to feel dizzy in supermarkets or at the mall if there are too many fluorescent lights. I really don’t like LED lights


  • micmel
    micmel Member Posts: 10,055

    Oh BooBoo~💔 they don't understand at all, they Clearly do not. I understand , I would feel the same way. I have had abraxane, its isnt as bad as the red devil. More mild. Especially after two days. I am sending you my love and hugs and support. I adore you friend. My onc says there are many treatments. But do I actually want to try them all? Hmmmm not sure about that one. Wrapping you in hugs.

  • mara51506
    mara51506 Member Posts: 6,482

    Well, I gotta say, if I don't like the color temperature of the new bulbs I bought, I will simply swap out the kitchen with my own bulb once I get the 2pin adapters from Amazon tomorrow. No one will know and I will keep the bulb that the apartment people used that way if need be, I can put it back the way it was.

  • mara51506
    mara51506 Member Posts: 6,482

    booboo, I am sorry your MO can't empathize with the need for quality and not quantity of life. I totally agree with you on that point too. The MO should be able to empathize and understand that we have SE and things that we lose by having these drugs. If you said forget, I want whatever time left without the drug side effects getting in the way of living, they should be able to understand and not look at you like you are crazy.

    For the record, if Herceptin fails, that will be the only drug I want. I will never do another systemic chemo that attacks my whole body. Don't want to deal with those SE while on my own. If I am offered Kadcyla, I would consider that since it targets the HER2 protein and not my whole body.

  • Newfromny
    Newfromny Member Posts: 108

    I am grateful to be able to spend this Christmas with family image

  • booboo1
    booboo1 Member Posts: 1,196

    Thanks Mel. If you have any words of wisdom, or specific things I should do or watch out for with Abraxane, can you let me know? Thanks my friend. You are such a comfort to me. Your support is amazing. I can feel the hug right through my iPad!

    I am just getting so weary of the way my onc talks about these different treatments. Like they are amusement rides. Which one would you like to try next (with a smile on her face). There is no compassion at all. Just treatment options. And her matter-of-fact way of saying it....I want to smack her across the face and remind her what it’s like to have these “options”. These are not options. These are just more ways of walking the same plank.

    Hoping tomorrow will bring more hope and less anger

  • booboo1
    booboo1 Member Posts: 1,196

    I totally agree Mara. These drugs don’t just kill cancer cells...they also kill the good ones. I have not been able to get over a cold I picked up from before Thanksgiving because my immune system is shot. But that won’t stop her from moving right on to the next drug.

    I am considering going to get another opinion and postponing the Dec. 23rd start. Not sure yet

  • mara51506
    mara51506 Member Posts: 6,482

    Booboo, I know you will make the best decision for you. If your present MO is not appearing to take your concerns or treatment decisions seriously, you should first speak up and tell her how you feel. If she is a good MO, she would listen to you and either offer her reasoning (in a non judgmental way) if her view differs from yours. There should be inherent empathy and you need to be comfortable. If you are not then definitely look into another opinion or MO. I hope things look up from here for you. I do think you should tell your MO how you feel, or bring someone with you who can articulate your needs for you if you feel uncomfortable.

  • micmel
    micmel Member Posts: 10,055

    Ann~welcome to our thread..... I get nauseous if I stare at the fluorescent lights too long. I also don't like the tints of some of the new twisted bulbs that they say have a million hours or something like that.

    Mara~Hello lovely lady ~Always good to see you.

    Ny~your tree is absolutely lovely I love the comphy cozy looking area it's in and it looks like Santa has come early this year. At your house! Mine too actually. Also, welcome to my second home

    Santa~Hello there friend Welcome back and hope You're doing ok.

    Sondra~Now I'm dizzy thinking about the lights at the infusion center that I go too. I hate them so very much . Yuck!

    BooBoo~Thinking of you friend.

  • candy-678
    candy-678 Member Posts: 4,170

    Evening all.

    Boo- Why not a 2nd opinion before starting Abraxane. Or at least a good discussion with your current MO. Bless you. Your comment about your onc discussing the different treatments like amusement rides with a smile on her face reminds me of something my sister said one time when we were discussing chemo in general. She said the oncs always discuss chemo like it is no big deal. Just a few months of chemo and everything will be ok (cancer patients in general). When we know that any chemo treatments is no walk in the park.

    Well. I live in a town of 15,000-20,000 people. I have MBC bone and liver mets. Getting treatment locally. I know of another lady with MBC bone only mets in year 7 getting treatment locally. I got to meet another woman in Oct with MBC bone and liver mets. Her treatment was in a large cancer facility. I don't think there are many more of us---from the conversations I have had with my MO office. Well I saw the obit for the one I mentioned above that I met in Oct. She died on Tuesday. Age 40. Kind of felt like a kick to the gut to see her obit. Something needs to be done to stop MBC.

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719

    Busy thread this is!

    Philly and Candy hope you are hanging in there?

    Lots of us are retiring or already retired... me too. I‘ve just officially applied for an enhanced pension, but apparently the pension agency is very ‘picky’. Got as many ducks in a row as possible.

    Love the trees... not even near getting ours sorted yet.

    Completely get the issue with quality of lighting ...I absolutely hate cold blue top lighting. Much more a fan of warm highlights.

    Pocket duty I am def up for as worked for me this month! Thank you all