My Husband, My Life, My Love, My Family, My Cancer
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@sf-cakes Congratulations on being stable. Yes, give yourself grace and celebrate. Every step is an earned milestone.
I know more of you have scans, appointments, etc. this week. We support you in your scanxieties and fears, and pray you find solutions to insurance hurdles and side effect control. I have a brain mri scheduled for early Sunday morning. I am nervous about this one since I have increasing headaches. Does anyone know if you have to wear a head/face brace for this mri or do they just block the head so you lie still? I am not very brave it seems…
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Mara Glad the container was returned, guess it was an accident. Happy to hear you enjoy your outing.
@sf-cakes Congrats on stable! I feel the same way about stable also. Relief that I am stable but wonder how long will this continue. Isn't it terrible that we can't even celebrate our small wins wholeheartedly . Not that I walk around as doom and gloom but never totally at peace I guess. Continued strength as we try to forge forward the best we know how . Enjoy your moment of grace and laundry lol
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Intolight- Thinking of you for your brain MRI. I have had 2 brain MRI's- the first when first diagnosed, as a baseline. And the second in 2018 when I had a "vision thing" and they were ruling out a TIA/mets. They put your head in a type of stabilizer/block, so you don't move your head. But it was not like a mold you see pics of that they use with radiation. Deep breaths.
2nd eye cataract surgery done. Follow up 24 hours post-op looks good. Mild swelling of the cornea but healing well the doc said. I see flickers of light; she said that is normal. Follow up in 10 days. New glasses in 3 weeks or so.
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@candy-678 Thank you for your response. That was the response I was hoping to get. I can handle that. It is an early appointment for me... have to be there by 7:30 am. I don't do early well, but I'll make it. My DH and I will go out for breakfast after. Since my big D has subsided on Orserdu I should be fine.😊
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Intolight, like Candy, my last brain mri included two bolsters placed gently on either side of my head, no cage kind of thing. And then the usual instruction to "not move". I realized after I was in the mri tube that I still had a cough drop in my mouth, whoops, but kept it firmly tucked in one cheek, and confessed to the techs once they pulled me out - they said it didn't matter, as long as I wasn't moving it all around my mouth 😄
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Intolight - I had a brain MRI when I was diagnosed in fall of 2018, but I honestly don't remember it now; not any details at all, except that it was clean. Sunday morning seems to be an unusual time to do a scan like that. Was this your choice or all they had available, etc.? I'm glad others here do remember how the procedure went, so that they can help you with that. Well, I've got my fingers crossed for you of course, and am in your pocket. I get up fairly early, even on Sunday, so I will be thinking of you for sure! Best of luck!
Editing as forgot to ask, do you think the increase in headaches might be due "just" to the new Orserdu? So many of these drugs can cause headaches, so might just be something more "minor".
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@threetree The headaches have been slowly increasing for a couple of months now—before the switch to Orserdu, but thanks for suggesting it. I don't really think there is a problem, but I will feel better ruling it out. Of course we never know! The Sunday morning was what was the soonest available that offered a nurse to access my port. Otherwise, I had other options but not with the port. I took it because I didn't want to wait an additional month just so they could use the port and my oncologist wanted it asap. It still took six weeks!
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Chicagoan, there is a wooden structure that hold the garbage cans the building supplies but I find it awkward to pull along on wheels and I would have to bring it back to the wooden structure so it is easier to use bags only when I put out garbage. The recycle bins which are small, not big stay in the apartment. I did actually find my recycle bin in the hallway by the front door so that was nice.
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@intolight Best wishes for a clean mri. I need drugs to get into those machines, lol. I take lorazapam to knock back the anxiety I develop. The machines are more open, so most folks are not so claustrophobic. @candy-678 So glad that the surgeries went well for you. It'll be wonderful to see the spring time bloom without vision problems. You'll have a couple options on how to decide on eyeglasses. If they implanted for distance, you'll just need something for computer and reading.. Some folks have one eye corrected for distance and one for reading. That's called monovision. It's not my cup of tea but most people have good success with that correction.
It's 4 a.m. and not asleep. This has been a problem since the cortisone injection. I have to admit I'm in a great deal of pain, no improvement in the back and shooting pain down my butt and to my knees. I think I recall Dr. saying sometimes it gets worse before it gets better. All I want to do is….sleep!! I see MO Monday. Not comfortable waiting a total of 9 months between scans. As someone mentioned, I'm still fairly newly diagnosed stage 4 and even though I have shown great improvement, mmmmm makes me nervous to wait that long. House is clean, food cooked and leftovers for lunch, so maybe I'll stay in bed today. Finally took the bearded dragon out on grass and she ate her worms. Geez I wish the kids would come take Winkie. I adore her, but do no like being responsible for her health. P.S. She only has one eye, so it is a struggle for her to see the worms.
In pocket for scans and all of life's matters. Thank you all for being such wonderful friends.
Laurel
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Mara-Glad someone returned your bin.
Irishlove-Sorry for all the pain you are in. 9 months does seem like a long wait unless you've been stable for years. Why don't you just tell your kids they have to pick up Winkie? You have enough to deal with right now.
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@irishlove Sorry for the insomnia and the pain. At least you have a clean house. I look around me and sigh…dishes from last night in the sink, dust on the furniture, and I haven't decided on what's for dinner yet. Hopefully once my daily pain subsides I can remedy that…or not! I agree your kids need to come get Winkie. I can't imagine adding that little chore to everything else. The scan machines never bother me although I don't like the noise from the mri. The worse part for me is having to lie there with my arms over my head as I'm not very flexible. That won't be a problem tomorrow as I imagine my arms will be at my side.
Take care.
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Intolight - Oh I see, the headaches started before the drug change. Well, I can sure understand you just wanting to rule it out, even though you are not especially expecting anything to show. Also, I can see now about the early Sunday morning appointment, if your port is involved, along with the need for a port nurse. Since I haven't had a port for a while now, I forget that many still do (and that I could wind up with one again in the future). Well hopefully the weather will be good tomorrow morning and you can have a real nice spring morning drive to your clinic. Maybe it will put you in a better frame of mind for the procedure. As before, fingers crossed, and in your pocket. I will be thinking of you.
Irish - I sympathize with your need for drugs before getting in those machines. I "almost" need them, but have found that just deep breathing, closing my eyes, and having music/headphones can make that difference for me. Nice point you made to Candy re how spring bloom time would be great for beginning to see well again. I just read an article yesterday in Yahoo News about how looking at flowers can improve our moods, psyche's, etc. I was on my routine walk shortly after that and paid even more attention to the spring buds and blooms than usual. So nice. So very sorry about your insomnia and pain. I had no idea that people getting those injections could get worse before better. I always assumed (and had heard) that that cortisone went right to work, but I guess that's not the case. I hope you are feeling much, much better real, real soon!
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Irishlove, I was up around when you posted about the pain and not sleeping. In your pocket that the pain subsides and for the sleep, is there a sleep hypnosis you could listen to and do some deep breathing. I had periods that sleep was difficult when I had to be on steroids and those helped me a lot, especially when in hospital room with 6 other people after brain surgery. The hypnosis can be in the form of a subliminal messages, I use one for no pain, subliminal in the rain. Just a thought, barring that I do hope sleep finds you. Enjoy the leftovers and even if you stay in bed, you will get some rest. Winkie sounds adorable. I do hope Winkie is picked up
Intolight, in your pocket for the MRI, I am in your pocket for that. I know it is scary when you have not had it a bunch. I've always thought that they shoul
Not much happening here, have laundry on the go and the regular chores. Planning a meal with beans, cheese and eggs. Also must remember to drink up some chocolate milk, probably a cup worth worth, even a 1/2 cup would do for me, I will see. Keep up with beans and rice later in the day and look up the canned sliced mushrooms to have along with. The egg meal, I will throw the beans in the scrambled egg mix, microwave for 3 minutes I think. The first meal I decided to have was a huge salad, threw in some shredded cheese and a few chips to serve as croutons, it was really good.
I do hope your days are going well and in everyone's pocket who needs me.
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@mkestrel I love cobachan and love collecting stone crystals agate, and such. I keep a lot of variations in a little area in my bedroom with cherished family pics. It’s serves as kind of a comforting spiritual need inside me. I. Planned today to straighten and clean this little crystal shrine area today but not feeling like it today. Also I have. A pretty pair of opal cobachan earrings I love. Thanks for sharing your creations . I always enjoy your work🥰🩵.
@mara51506 ugh, sometimes people can be such jerks. Sorry you’ve been dealing with those recycling issues and stupid fools making your lif just. a little mom complicated than it already is. Hang in there sweet girl. enjoy your kitchen creations🌷🍛
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Hi all you lovelies. I'm so glad that spring and those beautiful flowers are in the air. My sis gave me morning glory seeds and within one week I have growth. Sis picked forsythia in PA yesterday. Trying my first hydrangea bush in FL. Always had them in NC and PA and they were beautiful. Kids came bye to pick up there mail and some of their plants. But not Winkie. Winkie's cage is glass and they have no room inside for her. They can't use that glass due to the excessive heat. I have to look for a bunny hutch for her. That should do the job.
Anyone catch the article on an agreement made under inflation act reduction, regarding certain drugs prices? Well one is Ibrance. Let's see what they do with that ridiculous retail price. Others were mostly weight loss drugs which also treat diabetes.
Hope everyone has great scans and a beautiful painfree week.
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intolight pocket duty for tomorrow. I hope your scan is short. Mine take over an hour. I do take meds to make it.
candy I hope you’re getting around better inside. In A few weeks you’ll have both eyes done and new glasses.
lots of beautiful flowers blooming.Have some guests this weekend a dear old friend and her teen daughters. Very nice and cozy visit. Also visiting my daughter is her mother in law. Such a wonderful help to both of my daughters.
Have a good weekend all.Tanya
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@candy-678 Glad to hear your on the recovery path and this will soon be totally behind you. I'm sure you are very relieved.
@irishlove Hope your sleep improves, how frustrating! I also checked on my seeds yesterday and they are starting to sprout. I guess the youtube ziplock bag method is not a bust here in NJ lol. You are one strong and fabulous matriarch. Always there for your children no matter how bad you feel. I hope you have a better week ahead.
@tanya_djamila Nice to hear you are enjoying your company. There are nothing like old friends to give u a boost. Enjoy!
@intolight Thinking of you and your MR today, may it go quickly for you and yield good results💕
Enjoying the warm weather this weekend. Continuing spring clean up a little at a time as my hands allow me.Thinking of all you ladies and always keep the group in my prayers.
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Happy Sunday morning to all!
Intolight - Thinking of you with fingers crossed 🤞. Have a comfortable and restful second half of your Sunday.
Mel - Sending good thoughts to you, Gabby, and the rest of your family.
I'm just so glad that spring is here - except for the pollen. You just don't get somethin' for nothin' though, do you?
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Sunday Greetings lady friends, I’m just scrolling but not really reading anything yet. I just hopped over from the Staged IV Bone Mets. Thread but didn’t want to get off my IPad until stopping in here to say hello, and wish you a good day today. I’ve been really too down since meeting with the Neurosugeon earlier this week and haven’t felt very chatty. I’ll share more soon. Love you all🩷
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Grr. I accidentally touched an @ tag and lost my post.
Mostly, I wanted to tell @intolight year I'm thinking of you and your MRI guys morning.
and tell @candy-678 I'm good both surgeries are complete and look forward to hearing how good everything looks when you finally get your new glasses.
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Thanks everyone. The mri went well although I had to remind them the reason I had an early appointment and on a Sunday was so they would access my port. They called someone who came in two minutes. When I first arrived, at 7:30, there was Noone at the check-in desk—just a phone with a note to call. There was no one in the waiting room and no one in the hall. This is a major hospital! Although not the main entrance. The tech came within 5 minutes. It was a quiet scan. Everyone was very nice and friendly.
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Shana, I was lucky someone it into the building, I just happened to see it and brought it back to my apartment so that was good.
Intolight, in your pocket for the MRI.
Irishlove, glad some blossoming is happening for you, so nice to see blooms.
Tanya, glad you are enjoying your company, great visits for you.
I do not have too much happening, floors and a bit of laundry, amazing how many cleaning cloths get used by me. Still like steel boxes for the cats and the litter genie pail, works really well for me.
My laptop was starting a high pitched noise and was very loud about it, was wanting to buy a computer but DB wanted me to wait. Reluctantly agreed and pulled the back off, could not see anything but once put back on again, sound faded a bit and no longer freezing. So not sure what the difference is but I will take any improvement. Instead of a computer, got a new Android tablet instead. Though I have old tablets, they are soon going to be 10 years old so need an update, was not expensive either. I will figure out its role for either earning, bringing to appointments or whatever, I will figure it out. I will find uses for the old tablets
Yesterday did not feature any beans, first meal was some of the broccoli slaw, added some cheese and the mingles cheese and sour cream, kind of like cheetos texture but the differing flavour. I was good, used some caesar dressing. Ate peanut butter in the evening, that was very bad. but I am OK once in a while.
Meal plans today will start with stretching a frozen meal further by adding rice, would heat each separately of course, mix together and store in the fridge, can add some to a bean and cheese meal or eggs. First meal could include some of the frozen lasagna and rice mix, scoop out, add an egg that was precooked and chopped into cheese and heat all of it together. Later, take an english muffin, put on the bottom of a bowl, add garlic, cheese and beans and microwave that, would be good. At some point today need some chocolate milk I think, still taking vit D as well. Meal plan sounds pretty good to me. Adding, I did make a good amount of rice, beans, beefless ground cheese and used Mingles, the puffed Pringles snack, added tiny amounts of caesar, ranch and sour cream seasoning and the sour cream. Tiny but everything added together tasted was good. Still not oversalting everything.Booked the Paratransit for Herceptin, two trips which is fine. I used to try and get ahold of the Paratransit as soon as it opened but there really was no point in doing that and having to wait 40 mins for the busy signal to stop and then wait another 20 mins on hold. Calling around 10 am got me right through.
I hope everyone has a great day and in pockets for anyone who needs me. I will be figuring out the best use of the new tablet and what I want to use it for. Many different options inluding money making apps or music or just an extra screen. I will see, much cheaper than an actual laptop.
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Happy Sunday to all. Catching up on the many posts. Awhile back someone asked about the Signaterra tests and liquid biopsies , from Google : “While Signatera is a type of liquid biopsy, it's more specifically a personalized, tumor-informed assay designed to detect circulating tumor DNA (ctDNA) in the blood for cancer monitoring and detection of minimal residual disease (MRD). “ hope that is helpful.
Intolight - glad the MRI went well. I once had a PET on a Saturday, and it was the quickest waiting time and quiet surroundings too. Glad it went smoothly.
Mara - I wonder if the noise was the fan , mine sometimes whines. But I love my tablet(IPad) for reading on the kindle app for downloaded books from the library , YouTube comedy and music , and here typing posts and emails. Hope yours works out and you enjoy it.Seeq- I’m always loosing posts, by touching the wrong button lol.. I’ve taken to clicking Save Draft now after writing a sentence or two.
Shanagirl- sending hugs, just because…
Threetree- glad spring is here too, and yes the pollen in the air is the price of the lovely blooms! Not to mention my watery eyes, but I love that here on the east coast winter is fading slowly . I love the spring light.
My son and his wife came down for brunch, and we spent a leisurely few hours over food and live music. Was such fun. Tomorrow I start radiation again for new skin Mets, and go for PT for lymphedema.. and then home for a day full of meetings. At least my students have a field trip, so no teaching in the evening. Looking forward to a quiet evening after a full day.
Hope everyone enjoyed their Sunday 🥰5 -
Good morning night owls. The storms passed and it would be lovely to fall asleep. Busy day tomorrow and I'll be dragging to MO appt., shots in my arse and blood tests.
@cookie54 Oh you are so sweet………I wish I could do more for my kids. They struggle with cost of living nowadays. We helped this week with truck repair ($3000!!!). That one broke us. SIL steering column literally broke as he was driving home from work. Lucky he wasn't in an accident.
@micmel You and your family are in my thoughts and prayers. I hope that you can find peace in your's and Gabby's days. She has a wonderful Mom and someone to help guide and comfort her. I pray this too, shall pass.
Hi everyone. In pockets for scans and good results!! @intolight so glad that all was quiet and went well. Let there be nothing but good and better reports.. @mara51506 Our family has two tablets and enjoy them. You are right about cost of computers and those constant updates.
It's been a week since the steroid injection in the base of my spine. It is absolutely painful, more so today. I can't imagine getting an injection into that side tomorrow as the pain runs along whole left hip, femur and buttocks area. Any one ever ask and receive the fulvestrent shot in another location??? I am hoping for thigh area and I'm gonna ask MO tomorrow. Also asking him about 9 months between scans. A bit nervous to go that long. Maybe my cancer is behaving well enough, but my nerves aren't.
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@irishlove So sorry you are in so much pain from your shots. I am praying things calm down and that the nine months between scans means you are doing well and don't need them more often. I totally understand your nervousness…
@micmel I have been sending up special prayers for your beautiful Gabby and you that you have peace as you go through these troubled times. You both are in my daily thoughts and prayers all throughout each day.
The MRI report on my brain scan came back and everything is clear. I am celebrating with a warm blanket and a nice cup of tea. We are still getting snowstorms so the Spring dance will have to wait!
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Intolight, I am happy to hear about your cleann scan.
i have not accomplished much today except a meal. A cup of canned lentils, saved the aquafaba and whipped up in the magic bullet, used some to go in the dish, added shredded cheese, garlic spread and heated for 3 mins in the microwave, added some salt, sour cream seasoning and sour cream, it was very cheesy but also pretty creamy. I enjoyed it a lot. Tonight will be eggs, beefless ground and cheese, microwave the egg first then chop into the beefless ground. I will figure it out.
Typing this on a wee keyboard that came with the tablet but just put it aside for now since there have been many typos.
I hope today has gone well and I'm in pockets as needed.
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congrats to all stable. I think of you all. Daily. Hugs
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@intolight I’m so happy to hear your MRI went smoothly. Enjoy the peace and comfort wrapped in a warm blanket and cup of tea as you weather the snowstorms, knowing your brain MRi was clear🩵
@irishlove I’m in your pocket while you deal. this. week with your injection SE’s. I’m also thinking about your SIL. I want to thank. you for. your kind encouragement when I shared my fear and anxiety over my upcoming surgery for my cervical spine stenosis over on the Bone Mets thread. your. words we’re comforting. @micmel I’m sending you breath prayers during these difficult days for you and your sweet DD.🙏🌷
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hello beautiful ladies. So nice to see all of your names. I came to say hello and thank you all for your thoughts and kind words. She’s finished her heavy based chemo Paxman saved her hair. Torture. But it worked better for her than they had yet. Seen results. So that was a blessing. Now she’s moving in to surgery. I’m hoping they can do the sparing surgery instead of taking everything from her. It’s been so hard but has gone so fast. My DH has retired abd has been unbelievable in what he has done for my daughter. He drives her to every appointment, was at every chemo done. He was and is amazing. I couldn’t have done it without him. He’s just the most wonderful man. I was gifted from someone when I got this precious soul . I hope everyone is doing ok. I’ll be reading more later. Just wanted to say hello. Goldens 💕🥰
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Micmel-Thanks for the update. Glad that DH has the time now to be so helpful. That must be a big relief for you. If I was your DD and that young, I would want full mastectomies and full reconstruction, to try and minimize the chance of any recurrence.
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