My Husband, My Life, My Love, My Family, My Cancer
Comments
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micmel, looks like you had a good birthday, yay but I’m sorry to hear about your brother, hoping for a full recovery.
We had a couple friends over for the weekend and it was nice to see them and their wiener dogs. Not much else going on here.
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mel -- your DH has a great eye for color!
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Micmel, the pot on the left is cyclamen. I love them! X
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Hello lovelies, I wanted to pop in to that I see as the living room of the MBC community. I have not been active on the site because it was so difficult for me to feel like I knew ladies and then we'd lose them. Anyway, I hope you don't mind me reaching out for help. I posted over in Brain Mets and wanted to see if anyone here could check out my post and see if you have some wisdom to share. Blessings and virtual hugs to all.
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Dorimak, I posted on the brain mets thread.
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Thank you to all for the good wishes for my stable scan results.
Mara- Wow you are tough !!! I just cannot handle hot weather. Never liked summer, but anymore - with the hot flashes and I guess the cancer meds - I really cannot tolerate it. Last summer I was standing outside talking to some of the church guys that were doing some yardwork for me. Not doing anything but talking and I was soaked in sweat and got dizzy and weak. And if I walk over to the neighbors next door I am huffing and puffing and short of breath with the humidity. I come in and bend over the AC floor vent trying to get my breath and my cat just stares at me.
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Candy, I don't handle heat well myself except I don't want to have to ride a bus or take an UBER to get to the hospital. I am trying to build some tolerance to the heat. The only way I can that is just do it and keep the sun off me. I also had a lot of help with the evaporative cooling scarf, the liner that goes on my head under the wig and the umbrella. If you are out and it is hot and sunny, an umbrella really makes a huge difference. My black automatic ones are coming tomorrow. I am lucky in a way that I keep my bio hair short and am bald on top because it makes the liner (which is what construction workers use) keep me cooler than I would be. I also used to pass out in the heat previously. This is just my mind trying to find what will work best. Thankfully, the superhot stuff is supposed to break on Thursday and stay cooler for a bit. I still plan to use the umbrella since I still don't want a bunch of sun anyway.
I am an incredibly stubborn person and always look for ways for my life to be easier. I do my best to rely on myself and not other people, even though I can always ask for help. I have also gained some weight with what I like to eat now. Though it is nutritious, I need to maintain some form of physical activity. I also plan to walk in winter again. Have piles of footwear no matter what the weather is like.
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Candy, hooray for your good scan! The report had better appear in your portal today.
Re hot weather — I guess it is the cancer drugs; I have no tolerance for heat any more. If I go outside and it is sunny and hot, I instantly get a headache and feel like I will go down if I stay there.
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I hear you SP. That's why I decided to try an umbrella. I really don't care if people would find it strange, I don't like heat or the possibility of melanoma due to brain radiation. Umbrellas really do make a difference, along with cooling towels. I don't like the hats that protect the head and the neck for me, but those would be helpful.
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absolutely annoying the heat. And can’t take it either. It causes an instant heat flash and I sweat profusely. It’s a very very uncomfortable thing. I could never go to the beach again. I don’t know know I’d fare under a big umbrella I’m thinking I graduated to the lake house with the shade and trees. Cooler temperatures all around. I feel better at around 60 to 75 ish. I can even handle 50 55. But it was 84 today. Um not already please.
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Waving hello to all
Candy again that’s such a great relief for you! Congrats
Mara you are a really kind person. I followed Dorimak.
Tanya
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Happy belated birthday, Micmel! 50 is quite the milestone. Now shoot for 60! You have a long life ahead! Much happiness to you. 🥳
P. S. It’ll be 107 here tomorrow. Thinking it’s going to be a looooong summer!
Suzy.
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Wow, I was curious and checked your weather. I know Arizona is dry. Kind of envy the lack of humidity as it would be easier to breathe but damn, that is still very hot. Hats off to you and dealing with it. Must be expensive electric with the air conditioning you must need to use.
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The struggle with insomnia lately is REAL - I cant seem to get more than 6 hours a night an some nights we are down to about 3 and a half. I think its a combination of too much screen time and also some ongoing issues with the lower back where I need to get up and walk around to get it to calm down. I do crash at about 4 pm every day for about 3 hours - I don't nap (just 'take the burn off' as my mother calls it), but I need to lay down and read a book and take a break before starting dinner. Then after that its like I've completely rebooted for the rest of the evening. Its driving me nuts!
Off to the hospital early this morning for a new blood draw after being low to start the new I/L round last week. So annoying - its a haul into town for a 10 minute thing, but at least I have the pills already so no faffing around for two hours waiting for the pharmacy to fill the script. Doesn't cancer know I have things to do?!?
I did treat myself to a bit of online retail therapy the other day to spruce up the wardrobe a smidge as there were deals to be had - I find it hilarious that all the styles lately are super exaggerated silhouettes/Japanese square and cropped stylings which look good on a stick figure but not on someone with curves. Even the 'larger lady' Italian brands are pushing this look. Ah well, at least you know it will fit AND be comfortable - looking like you are being eaten by a tent is IN! Hell, a bedsheet and some statement jewelry is all you need apparently.
Have a good day ladies!
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Happy belated birthday Mel! Big hugs to you and so happy it was a nice day.
And yahoo for good scan results Candy
Argh, the heat. I have become spoiled and happiest at about 72, which luckily it is a lot of the time where I am. Otherwise, I swear and my arms are always wet. So groas
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back from blood work. Persnickety port showed up today. Ughhhhh hate that Takes forever. Got it out of my hand after all. Xgeva shot also. So I’ll be feeling grand soon. NOT! Makes me feel out of it and yucky. good to see you Jen
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Micmel—- I have found my port gives me trouble when I am not drinking enough water. So the day before blood draws and the day off blood draws, I drink lots of water like I did after IV chemo. That seems to do the trick for me....port keeps working like a charm.
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Hi all.
Today I got my Ibrance delivery and went to Walmart for pick up of grocery order. Hot and humid here with storms in the area.
I have posted on the Ibrance Thread about my MO wanting me to have Neupogen. You can read there, I don't want to repost all of it. But I guess tomorrow and Saturday I will be getting those shots. Fun fun.
But whoopie I have a hair appointment for next Tuesday !!!!!!!! First cut since January. My hairdresser is opening back up next Monday. Stay in car until called in. Temp check at door. Mask required. Any symptoms of illness cannot come in. Hairdresser will wear mask too. And wash down station between customers. I think that sounds pretty darn safe !!!!!!
Mel- Hate when Port acts up.
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candy-678: congrats on good scan results.
Ref Neulasta- as others have written, taking Non drowsy Claritin the day before, the day of, and the day after really helped me with bone pain from the shot. I took generic Claritin
Ref Neulasta, if you don’t get insurance approval check with your MO team. The maker of Neulasta has a service to help with the cost. If approved, they pick up all but $25 each shot. Back in 2017 Neulasta was billed to my insurance at a cost of $14,000 each OnPro device (one time use)
Are you finding toilet paper yet at your local stores?
Enjoy your haircut next week. Sounds like a plan to me.
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Dodgers- I saw your post on another Thread that your scans were good. And continuing Ibrance. Woohoo !!!!!!!! I do not have any Claritin in house and don't want to go to store just for that. I do have Tylenol to use if I need it. I ordered TP from Walmart-- it let me on the computer. But then I got email that it was out of stock. So no TP from there. I went to Dollar Store on Saturday and they had some with a limit of 1 pack.
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Dodgers and Candy, glad to hear about your good scans.
Candy, so excited for you to get your hair done. At last, something normal and nice happening for you. So happy.
Today I got my UV blocking black umbrellas. Two since it is always good to have a back up. Automatic open and close too and will fit in the knapsack I use for groceries, or cancer clinic appointments. Very nice. I also got a shoulder shrug sort of white UV blocking fabric that keeps you about 3 degrees cooler. It is a really light material and feels very cool. I don't plan to use all this gear if UV index is not high or it is not hot out. A ball cap and sunscreen will suffice but these things should make summer easier to get through. Our weather is supposed to break tomorrow and be more seasonal for the next couple of weeks which is nice.
Mel, I have had my port 5 years now. It is the one thing that has never misbehaved for blood. It is even accessed before MRI and CT scans to give the dye. It does turn to the side a little which throws some of the nurses but works well.
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Dodgers, our local stores are plentiful now in TP since limits were assigned and I shop early in the day with seniors and other disabled. I am also pleased to say that I found Purell hand sanitizers on my dollar store website I could order. Had to get a case since they are bulk sales only, but each one only cost 1.25 which is an appropriate cost to pay. Some joker on amazon is selling hand sanitizer, same size as my containers but wants over 5.00 each one. As if I would pay that.
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Mara51506— wow we haven’t seen toilet paper in weeks and haven’t seen Purel since February
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I forced myself to look at some clothing today online. What a task. I know I hate shopping period. But I do need some new things. Even if i have to mail them Back I will. I jut want something nice once and a WHile. Something not so frumpy I found some good things at H&M’s store online. Some cute things. I am a creature of black and white and grey. I got a blue and a sage green dress. I hope
I like them. I need a boost. I miss wearing all the cute. Clothing. So I’ll Keep trying until I find things I like. Just wish the stores were open. I never want to. Clothing shop. Ugh!0 -
I ordered some new clothes too due to the weight loss, they should arrive tomorrow and new week, I’m excited.
Not much else new right now. Goodnight 😴
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It's a cyclamen.
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Micmel, Happy Belated! At 50, you are just getting started! So pleased that you had a nice day. Hope your brother recovers quickly.
Candy-Thank goodness for stability!
I live 30 minutes from Portland where my MO is. This week, I had 5 appointments in Portland. 2 of them were for my car because I creamed my right side mirror when backing out of my garage. Tuesday I had chemo, Wednesday liver MRI, today oral surgeon for consult about the ONJ. So two back molars have to come out as well as removing the bone that is jutting out. Yeah, can hardly wait for that. Waiting on the MRI results to move on to Y90 procedure on left lobe of liver.
Been gardening up a storm! I think it's saving my soul. we have had a beautiful stretch of weather. Tonight I planted half a seed pack of beets. I love them! Going to do the rest tomorrow.
Extremely saddened and stunned to learn yesterday that one of my neighbors and good friend has a a rare form of Lymphoma in his brain. Life is precious....
Love to each, Mary Jane
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MJH, I am so sorry to hear about your neighbours lymphoma. You are certainly right that life is precious.
Dodgersgirl, the toilet paper showed back up a few weeks ago in stores. They set a strict limit of 1 per order. Sure it means people will probably have to go back multiple times or make arrangements with the store if they are picking up groceries for other people too ( like people who cannot get out ) but it seems to have quieted the TP panic buying. I also bought a bottle of rubbing alcohol when I saw one on the shelf (there were two but I left the second one). I don't actually use TP, I stick with towels and a bidet. I can wash them constantly. I like microfiber best. My bidet does not have a drier so I use a hair dryer set to warm and wipe up. Good system actually. Never been so clean outside of showering. I keep TP in the house on the off chance family is visiting and may need some but I never use it. Don't use kleenex either, use handkerchiefs instead. Cheaper for me in the long run.
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Mel,
I think you need to branch out and buy something with a color you never buy....like orange or purple. You would be surprised at how trying something completely new can boost your outlook. You also need to know that beauty is seriously from the soul, and you my friend, are beautiful in leaps and bounds! Never forget that. Because it’s true!
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ty Gussy!! I hope i can keep it alive! I love it.
MJH~ I am always pleased to see you here lovely.
Hello Mara and Candy.
BooBoo~ I agree with you. I don’t really do that. The sage green dress is a stretch for me even. But I ordered it. Also a baby blue blouse. I’m excited to get them. Congrats on your new clothes also Mae. Hope you’re thrilled with them. I’ll shop until I find something. I like. Why buy them if you won’t wear them. ? I want to wear nice things again!0
