My Husband, My Life, My Love, My Family, My Cancer
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Moomala, I’m sorry to hear you’ve lost a loved one. I do like that you call her young at 50, I’m 44 and boy, do I feel old sometimes.
For those of you who enjoy my travel packing skills, I am now pre-packed and ready for New England in a couple weeks! I’m using a “weekend” bag for 9 days of interchangeable outfits, two pair of shoes, pjs, swim dress and toiletries bag (with room to bring back a few small souvenirs.
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Mae-are you going to Riot Fest? I may see you there. Looks like you are all set for New England!
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Impressive Mae! I can't wait to hear about your trip. I've been to NH, Maine and Vermont. I hope you like lobster!
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RiotFest - whoa that's huge! My son toured with quite a few of those bands back in the day. My favorite time was when he toured Euro opening for Rise Against and Tom Morello (I have a thing for Tom Morello) I kept hoping my son would bring Tom Morello home with him. Alas, not even an autograph.
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Moomala, I, too, am sorry for the loss of your friend. Yes, 50 is too young to go.
I appreciate what you said about how you used to be smug about things. I was sort of like that, thinking I had answers to life's difficulties. But I know I never told anyone they got cancer or any other kind of tragedy befell them because god wanted them to learn something, eat something else, forgot to exercise or they were full of sin, etc.
i guess it's human nature that people try to make sense of life's difficulties. There’s a randomness of life that happens sometimes which some cannot accept. I just finished a memoir written by a man whose 2 year old daughter died after a brick fell from a building hitting her in the head. There is no making sense of that. It is something that happened and I refuse to believe god “allowed" it to happen. A well loved couple we know in town experienced a double tragedy where she needs round the clock care after a brain aneurism and he was diagnosed with colon cancer and died eight months later. They did nothing wrong. It is a tragedy that happened.
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Yes Chicagoan, bought tickets to riot fest this morning. BFF lives in Wisconsin, so she’ll meet her there. DH has a tour (drives the band bus), not a riot fest band though, beginning in Waukegan a couple days before, so I’ll probably fly out with him, hang around and get dropped off. If I’m not out watching bands, I can probably be found near the VIP bar 🥴🍺
Moomala, I love lobster so much, it’s going to be awesome.
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Mae~LOL outstanding packing and travel correspondent getting ready for more reporting. The Jaws shirt is right up my alley! One is my favorites! I was even afraid to swim in my pool! I am now 49! And I feel 55! Blows my mind from day to day to day what I can and cannot eat. Ibrance makes some months tolerable with my mouth. Others. Not so much. I am waiting for the awesome photos! Be safe though! 🦞🦞🦞🦞🦞🦞🦞🦞🦞🦞🦞🦞🦞🦞🦞🦞🦞
Chicagoan~😃🥰 hello there sweetheart! It's always so nice to see you! One of the originals of this thread. I've missed you and hope you're doing well. Sending hugs your way. If you're going to attend the fest,,, be safe.
Moomala~I am sorry about the loss of your friend. I know there is never an easy way for loss. I am still floundering with my father, you're not alone!
one of the things on my bucket list was to see Elton John. My DH surprised me and took to me to the show. One of myFavorite songs ever is “Tiny Dancer". It was such a moment. I bawled like a fool! It was wonderful. I have seen George Strait 4 times (my Elvis and very favorite in the world), Alan Jackson, Toby Keith, Taylor Swift,Ronnie Milsap, Big Little Town, Martina McBride, Reba Macintyre, Kelly Clarkson, Motley Crew, Barry Manilow, Paul Mcartney, Janes Addiction, Aerosmith, Michael Jackson, Justin Bieber, Guns and Roses, Stevie Nicks, Metallica,Queensryche, could be more but Ive forgotten. It was all before I was diagnosed! I miss those days. So very much. !! I met and hung out all night in the rear bar with Queensryche, who were myidols! I have pictures and signed cds from them. It was incredible! I miss doing my life things that I enjoy!
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Mae your packing skills are amazing. I think you should make a you tube video. When that polo bag was filled my mouth dropped open. Your cabin floor looks rustic and gorgeous. It looks like it smells like fresh wood.
Gum doctor I have a cousin who I love dearly and he always drops some shade about somehow cancer is my fault and perhaps my diet or the way I breathe air has caused it. Ugh! I love him so enjoy talking to him until he gets to that part and then I get off the phone out the room out of earshot like my behind is on fire. Your flowers are delightful. I love gardening too but it’s a challenge still I planted veggies and lovely plants outside my window. Every morning I look at them through the window and then go outside and look at them some more.
Micmel sorry about your neighbor and her you must be getting better comments. Nobody wants to believe and understand MBC bc then they would have to face their own mortality.
Moomala sorry for the loss of your young friend.
Grannax is that she’s toast?
Waving hello to all 👋🏾
Tanya
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Tanya~It seems even if you tell people that you're never going to be cured. It's like you never said it, the next time you see them. Sometimes, it's the same conversation over and over. This is the same woman who shined a flashlight into my sons window at 11:30 at night. While he was playing xbox. Asking him to come outside to talk. Which is weird in itself, my son was still like 18. She's like 55. Very odd person In general. My closest friends know, and thats what matters. I try to keep To myself. There are some grad parties coming soon. We've been invited. One i will Definitely go too, close friends since my Son was in fifth grade. Best friends for years. It's pretty awesome. Their entire family went to my DD's wedding. So I'll go for a little while. Always good to see you! I just think people don't like to talk to, or face death in anyway. Avoidance is popular. Or cluelessness !
Waving hello to Divine!! What is the porch progress?
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illimae, love your traveling wardrobe.
Micmel, the 1st concert I ever went to was Elton John when I was 16. I loved him and have always been impressed with his incredibly long career, plus he’s taken on numerous social issues over the years. Love so many of the other artists you’ve mentioned. Btw, my porch is finally coming along, I’ll fill you in on the progress soon.
Gumdoctor, I find flower gardening, having one and seeing others, is very therapeutic. Going to botanical gardens always speaks to my soul. There is a quote that aptly describes how I feel: “I should like to enjoy this summer flower by flower.”
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Mae ~ you should hold a class called “Mae, and the wonder of packing, or there she goes again”. When that bag was closed. I broke out in applause! Like I said you amaze me.
Divine~The update on the porch doesn’t sound happy. I wanted you to be out front enjoying your java and book in the morning... I really hope it’s at least being corrected from last year. It looks so lovely. I’d love a coffee of ten on there. Listen to nature. Yeah! I’ll be right over !
Runor~ you ok my therapist?
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Tanya. Nope, not yet. But, it will be. Some of it has proven to be too high for me to get my crowbar up without falling of the ladder. Lol. But, I have a plan of attack, hire the guy who's been doing all the other work for me. He might even start tomorrow.
Seems like all of us have had our own personal experience with people telling us stupid stuff about our cancer. I don't wish it on anyone but they will sing a different tune if they get a DX. Then, they'll come running to us for advice.💞
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I have found. That sometimes, when someone you know has a scare of some sort with breast anything. They cannot break the sound barrier fast enough to ask me Questions. They want reassurance from me because I am “thee worst case stage “ they ask me about terms and words and acronyms associated with the jargon of words we’ve come to know all to well. Of course if they are close to me, I would hold their hand. But when I was diagnosed, someone who was like stage one came running over, she had a lumpectomy no chemo, some radiation which I know is terrible. But I didn’t want someone else’s reassurance. All I wanted was my DH and my family. No one else. But I have become the go to for all questions cancer!
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Here's my front porch saga: Last year we spent months trying to find a contractor to replace our 34 foot long front porch flooring, four columns and railing. Finally in October, Porch Guy installed everything...and within two weeks of completion, the porch floor buckled and heaved, the railing became unattached in different areas and a few other atrocities. We paid $9,000 for this incompetency! Dh read Porch Guy the riot act, but we had to wait till this year's good weather to get a redo.
Finally, repairs began the end of May. Porch Guy, for some reason, transferred his construction business to his son who handled the repairs. Porch Son was very respectful and he and his crew removed all the flooring which had not even been nailed properly the first time and nailed them down right. They braced the underside of the porch with new wood which Porch Guy should have done and put new wood support under each column. They addressed all the other issues, too.
Porch Guy tried to cover his complete incompetency by saying he'd just been trying to save us money. But we hadn't ever mentioned anything about keeping costs down. We were willing to paying what it took to have it done right. Porch Son and crew worked on it for six days and didn't ask for any additional money. I do appreciate that he righted his dad’s mistakes
So now it looks like this time should be good. We're painting and getting other small details done. It's been frustrating because so many other things are going on in our lives now and it adds to the chaos. But I'm glad we're finally at this point. Our home is old but lovingly remodeled over the years needing just about every home improvement you can do to a house. This porch project has been by far the most complicated, messy improvement to get through.
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Mae, you are the Marie Kondo of,our group. Great selection of outfits. Have a great time.
Sorry about your friend Moomala.
Tanya, my pain control is good. I can get around. A bit tired at times, but aren't we all.
Waving Hi to everyone, especially those who read but take a rest from posting. Sometimes I feel I have nothing to contribute, but I still read.
Night night from a pleasant high 70s Spain
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Minnie~ it’s always nice to see you! I would love it if it was 70 degrees all year round. I love that perfect temp. Not too hot and not too cold ! Perfect! I’m glad you’re tolerating your pain. I also glad it’s not keeping you down. You ladies are amazing.
Divine~I remembered that the person that tried to do it for you last year didn’t do a good job at all. I was hoping it was all fixed and you were sipping your tea and reading your books on your breezy company porch. Honestly that’s all I’ve ever wanted. Was a cozy porch with two chairs. One for My precious loving DH, and one for myself. Glad the son made it right....
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I am thrilled to report that my ladder climbing days are OVER 😁🎉
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That’s really awesome to see coming together! You must be thrilled! Little by little it’s really happening !! Waaaahhoooo! Well done! Loving the whole idea!
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Mae- I'm so jealous that you can travel so much and keep going. I ache so much I fear I'm more burden than anything going to Florida.
Divine- it's so sad that you can't get any good contractors any more. My mom redid her cabin and the electrician missed up lights and other things and had to come back. She had her deck painted and it all peeled up again. She paid for a 3000.00 wood floor plus labor. The floor they recommended has buckled all over. They came back to fix it by rolling it out. They put stops between bedroom doors that didn't match the floor at all. The strips had a million tiny nails that would cut the hell out of your foot. It's horrible.
Jfl -we will be in Orlando from Friday night until Wednesday. My sister got a free room so I'm taking advantage of it.
Tanya - I saw it was over 90 last week on Florida, hope I can take the heat. I have a PICC line so need to cover it somehow so I can get on the eater. Any good restaurants tips?
My scan- well I think I'm numb about scans. I've had no good news in forever I always expect bad news. This one isn't working, this one brought tumor marker down but did not do much else, this one doesn't work. I go in expecting bad now.
As for dumb people. I think everyone has the conception of how cancer was in the past. No one realizes how far it came. No one deserves to be told you have cancer to make you better. I'd have to look and say what's your excuse then? I pretty much told my bc to not come to appointments any longer. He would say anything, hold my hand, hug me or ask questions. The minute we left he had to get to work, thanks! He would then call all his friends and family and fill them in on my appointment. I said I think you just come to make yourself look good and caring and call everyone for attention. Of course no he doesn't. I said I choose how and when I want tell people what. I'm private l. I don't call everyone and tell them. I said he needs to ask me who I want him tickets tell. I said include hear yet don't tell Slav behind my back, if you want to know call me and ask. He only seems to want to come to the appointment where I see the dr. How does he think I feel. Two appointments he total forgot! I said cancer is every day of my life not just one day.
I text my sisters once about my appointment and one sister had to ask other one what I meant. Again I'm still here. You don't understand, I get it, ask me. She never asks about my appointments. Never asks how I am. It kills me. No it down right hurts me. My mom can't talk about it. I tell her too and she says nothing. Never asks questions. I'm just amazed how people are and who they become. I'm here talk to me. I feel like I have the plague sometimes!
I need to get to bed! Almost midnight here!
When life gives you lemons, make lemonade!
Sarah
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Skitz~I have alot if people in my life that do not seem to get it. Even when I was bald bald bald , people still managed to hurt me. Family especially does a bang up Job, just when you need them the most, is when the real mask comes off! I am sending you sweet loving hugs.0 -
hello all, I’ve been lurking for a little while since diagnosis not too long ago. I’ve been afraid to post here, still cannot bring myself to believe this has happened so fast. I’m from the October 2018 chemo group so my history of what I’ve been through is there. I’m waiting for a bone biopsy which will happen on the 18th and then meet with MO on 28th after everything comes back ( extensive testing is going to be done ) to start my treatment plan. I’m honestly terrified. I find myself wanting to talk but at the same time no. Not interested in hearing a healthy therapist tell me to be positive ( I tried that route in the beginning didn’t do a thing) Ativan during the day and ambien at night do work for right now. I think i just need a hug right now from someone who understands.
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Rabbit~I know exactly how you feel. I remember those uncertain feelings. It looks like your profile says bone only! That's a good thing. I can tell you not in a chipper you got this happy happy tone by any means. There are a lot of treatments that my onc continues to discuss with me. I've been on ibrance for 31.5.. months and luckily has been stable for me. Total diagnosis 3.5 years. I learned to take it one day at time. One visit at a time if I have to. I also sleep a lot from fatigue. You're so newly into this. I know there are many moments of despair, and let them out . But remember, You're not going anywhere today. Or tomorrow or anytime soon really. Just focus on each day. The treatments that they have and are coming up With are really working. They can work for you as well. Welcome to my second home, you're more than welcome to this loving sharing kind bunch of women who also understand exactly how you're feeling. Sometimes you just need to put it down, read it, and let it go at that moment.... We are always here.Gentle hugs my friend.... ~M~
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Rabbit, Damn girl.... Stage II at 36 and stage IV less than a year later, you’ve been through a lot. Welcome, pull up a chair (I’m sliding you a cocktail), we’re here for you.
I don’t think I’m entirely with it this morning, still working on my coffee. When I read the screen name, I read it wrong, I read it as ragged ass rabbit, lol, which made me think of this print I picked up at a cosplay convention in a hotel bff and I stayed at recently.
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Mae you crack me up! Thank god for google so I can look up cosplay and radagast.
Rabbit big big love. I just went through bone biopsy and stuff in April, dx with bone mets and lung mets - I'm on my second cycle of Ibrance and my tumor markers have begun to dip. I am believing that the Ibrance is doing its thing. I know just where you are although my situation is slightly different in that my mets didn't appear until 24 years after original dx. I spent about two months in tears and disbelief , and then started to find my old self again. Any therapist who tells you to be positive should honestly find some other way to make money. The reality is that your life is going to change and you WILL adapt. It's okay to be fighting that idea right now. We understand.
I'm had a check-up with the NP this morning (I don't see MO until I have scans in August). She said things are looking great, I'm tolerating the meds well, and my training wheels are off. I guess that means I'm now officially in the swing of things as a metastatic patient. I wish I could be doing something else but this is what i got. I'd love to exercise, and play with my grandkids and travel but I have a pretty important appointment with the spine doc next week to talk about the healing of these compression fractures and what the future looks like for me with activity and stuff. I hate that my back got this bad so fast. I sometimes feel as if a bowling ball rolled through my body and knocked everything down.
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Moomala~ibrance markers dipping is a good sign for sure. Mine have been up and down and up and down. Not many points differences but they can will vary. I am so glad you're tolerating the doseage well some people can't take the highest 125mg.ride that train!!
Divine ~ when you have any major surgery they will stop your ibrance. When I had my recon. I was off almost 3 weeks. It definitely makes a difference. I had to stop more than one. No naproxen or aspirin for over a week before. I'm sorry about your foot!
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This looks like my dog lol. Deeohgee. Lol. 0 -
Thanks for the Ibrance info. This is outpatient surgery, so I would not consider it major surgery, tho I will have twilight anesthesia. I had the surgery last year on my other foot so I know what to expect. But last year I was not on Ibrance. I’m not in any pain, but no weight bearing on my foot so I am getting around on a knee scooter. Very inconvenient. It’s been a pretty messed up year and I keep wondering why I have a black cloud following me around. It seems I get one or two complicated problems resolved and one or two complicated problems immediately come up to take their place.
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MicMel, so good to hear you have excellent results. Celebrate and forget for a moment about this horrible decease !
Love Elena
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Micmel, I am here. Reading.
Divine, I had a vision of you with your foot sticking out behind you in your knee scooter, knocking things off coffee tables like our dog does with his weapon like tail. Nothing is safe! Hope you recover quickly.
Everyone else, I follow along but can't keep relevant replies like Micmel does. It must be a fulltime job for her! Hugs and peace to all.0
