My Husband, My Life, My Love, My Family, My Cancer
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One thing I am happy about is I found my neurosurgeon on google, need to be able to call and find out what floor the office is on, after all the surgery and appointments before. I have forgotten to be honest. Do not want to bug DB or SIL on this question but will if need be. Will phone back around 9am
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Here for pocket duty for those in need - but especially Irish for her endoscopy and Mara for her follow up visit. I also have my scans on Wednesday. Concerned about clavicle on right side. Had some sharp pain there and the bone is now much more prominent than the left side. Oh well, what will be will be.
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@goldensrbest In your pocket for your scans and the right side of your clavicle.
I am ready to be done with the brain stuff, have my consult, have another consult with RO to see if radiation is required at this point. Not too bothered if that is the case.
Decided on breakfast, got some bigger potato cubes and beans to put in the air fryer and I can have some garlic bread. I must say it was really darn good. Beans were crispy and the potatoes though not crispy were good and did toast up some of the store bought garlic bread, both done in the air fryer. Everything is soaking in the sink, most likely for an hour.
EDIT I discovered a good way to stretch both yogurt and sour cream. I decided to have two more yogurts but don't have many left so I added some sour cream to the yogurt, mixed together and put some MIO powder in and it was super enjoyable.
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@irishlove - Really sympathizing with your endoscopy concerns. I've only ever had one of those and I was so nervous, scared, and anxious beforehand. Like you, I didn't like the idea at all of tubes going down my throat, the possibility of something going wrong, and then possible bad results. Well it turned out that things went very smoothly, I had no pain, and results were great too. I'd worried myself sick for nothing. I like to think that your procedure too will go real well and produce good and reassuring results. In your pocket for sure; sending a hug too!
@mara51506 - Lots luck with your neuro appointment today. Hopefully you can start to put this all behind you now!
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@irishlove Sending hugs for you to hold during your endoscopy. My own experience was similar to threetrees and I pray your fear will lessen and will be easy too.
@mara51506 Hoping you will be able to navigate the snow and find the office easily.
@goldensrbest I will be thinking about you on Wednesday for your scans and hoping your shoulder issues are easily resolved.
I am getting used to wearing hats in the house (it is cold on my bare head!) My next chemo is tomorrow so I will enjoy feeling good today. Mara, I made pork chops for the first time in the air fryer last night and they were easy and yummy!
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@intolight I remember feeling extra cold as when I was going through hair loss it was in the winter too. In your pocket for chemo tomorrow,
@goldensrbest In your pocket for scan on Wednesday, hope clavicle is a big fat nothing!
@irishlove Wow that's some crazy fluctuation in temps! Glad you were able to take bp meds, hope it helped and you're feeling better by now. Will be in your pocket for endoscopy , may it go smoothly and quickly.
@mara51506 Will squeeze in your pocket for follow up appointment. Fingers crossed for good news.
Hi to all here , hope it was a good day. ❤️In your pockets for appt, scans and whatever else you need!
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@mara51506 Thinking of you and hope that you made it to your appt. Also, that it was a good news and results. You've been thru too much.
@goldensrbest I was reading that some patients on AI's develop skeletal pain, sometimes severe. Hoping your scans are good and you can let go of some of the anxiety.
@intolight Hope chemo wasn't too difficult on you today. Heat really leaves the body thru the head, so bundle up good. I think they now make beanies with a heat switch built inside. Sounds comfy to me.
@cookie54 Thanks for the support and @threetree Thank you also. You both have lightened the load. I broke out in a rash upper body and worried that might be a problem for the endoscope. Not sure what the rash is from but I'm putting cortisone on it. Hoping it clears tomorrow.
Both dogs are sick and vomitted today. I believe it's that shipment of fresh dog food. DH is getting ridiculous on trying different foods and I believe this food was a bad batch. I could sense an off smell of the food in the bowel. Girls ate very little. It's been a few hours so hopefully this will clear on it's own. They are 12 and 11 and in pretty healthy shape, overall. Minnie has been acting a bit distant so I do have concern for her. I cleaned her ears and it did make a small difference. Didn't find ear mites but it was red from her scratching.
Hoping everyone stays warm (has heat) and is stable in scans coming up.
Laurel
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Thank you all for the pocket duty. I do not feel too bad as I am expecting additional cancer that could not be removed as there was additional crap besides the cyst he was going to try to remove. I am fully expecting more radiation to happen but not whole brain radiation. I may have to reschedule my appointment with my RO, it is a phone appointment but I have this week. As long as no further surgery is needed I am just fine.
Laundry on the go, slept well and will make bed, will have a quick breakfast as well, put on a warm shirt and a vest, no winter coat to speak of, Put a wig on finally, I am happy for that.
Breakfast will happen shortly, probably a microwave egg and some texas toast done up in the air fryer. Want to be done by 630 then get myself ready for 8am.
I hope everyone has a great day and in pockets for everyone.
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Well, so happy to have my wig on. Between the make up, wear everything but eye shadow or mascara, I look like a human being again.
Breakfast was 3 eggs microwaved and I cannot say they were particularly enjoyable since they had to be quick.
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Finally back from the appointment, good thing I called the hospital to let them know was going to be late. The Paratransit was booked for 815 am then not showing up til 845. Then there were 5 people getting off and on before me. Took deep breaths because not the drivers fault it was so busy. Then had the appointment and my Paratransit was coming within an hour, and they wanted a head CT. Waited half an hour but was taking too long so told the CT people I had to go. Was not interested in losing my ride home. Got my ride and the other lady I was with was one of the people from this morning. That was nice. I did call my RO, unsure if missed out on the call or else they may call back. There was no cancer found in the area he removed the cyst so it may just need to be monitored like we do with MRI already.
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@mara51506-It sounds like good news that no cancer was found in the area. Will you have to go back now or reschedule the head CT? Did you say earlier that you don't have a winter coat? That seems impossible for a Canadian. My go to coat is 11 years old-I bought it as Costco for $39 in 2015 and still wear it all winter. It still looks good-it's not a dress coat, just a basic down jacket. Probably the most economical purchase I've ever made.
Hope you can relax now and enjoy your day.
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OK, so I talked to my RO over the phone. Got some less than the best info. Not cancer but that the cyst and stuff taken out during brain surgery were necrosis. Basically if anything grew, radiation would not help, brain surgery is all that would treat it. I don't love this info but not panicking at this point, I would have to choose if I want a third surgery or not. The most recent surgery was not good for me. Oh well, it is not time to decide, keep having regular MRI scans and if more necrosis shows up, we will see what happens. As said I really am not receptive to having another surgery on my brain so will have to just breathe deep and try not to go beyond info I already have.
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@mara51506 how disappointing to read your information. It hurts my heart. I will continue to pray for you that things will stay stable and you can continue to live life the best you can. Love you sweet lady.
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@mara51506 I'm sorry to see that you didn't get the news that you were hoping for. As usual you have the best outlook possible in your situation. You will carry on and live the best life possible and address another surgery if and when in the future. We do our best to live in the present and don't let tomorrow's worries ruin today. Big hugs❣️
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Mara - I’m joining others in expressing disappointment in your news. Sure wish it had been what you were hoping for. What a kick in the gut.☹️ I agree that continuing with MRIs seems to be a good plan. You got this
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Thank you everyone. I will continue to go day by day, get info as it becomes available. It is necrosis from the two bouts of radiation I had in that location. Unless I was suffering, do not think another surgery is in my future. When I was in hospital, did not have visitors each day. It is hard to be alone in the hospital. I did have a talk with DB and told him that if my brain necrosis comes back, I am unsure how I want to handle it. Told him it was hard being in the hospital without visitors most of the time but that I understood they were getting my house ready for my return.
I guess the best I can do is just have the MRIs every 3 months or so and see what is found. Other thing is not to lose myself to my depression about this, keep myself on a bit of a routine and not be 100 percent sure this will kill me. It might but other stuff can happen too. Start enjoying life for myself, food as I like it too.
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@mara51506 - Joining with everyone else to offer my sympathies re your news not being optimal. While perhaps not optimal it's not unhopeful, and I think your plan to monitor; watch and wait, etc. is best. You can cross all those bridges about whether to have surgery, if and when the issue actually presents itself. You're a sensible person and I'm sure you know what's right for you, and that's a really good thing. Sending lots of positive thoughts and hugs 🤗.
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@goldensrbest Was hoping to hear that all went well and you are stable. Still believing this will be the outcome.
@mara51506I can't really add anymore to what has already been said. We all adore you so much and will support you in whatever decision you make. Just remember it's your choice if and when to have more surgery. It is lonely in hospitals without visitors. They use to send candy stripers around with goodies on a cart and to just sit and talk for a bit. My old clinic had a wonderful guitar player and singer a couple days a week. Here's to your spirit and know we love you gal.
They changed my endoscope procedure from noon to ten. I have to be there at 8"30. Not a morning person at all. MS makes it difficult to move and then there's the whole bathroom situation. Well at least the hospital is ten minutes from our home. Unlike Mara's dilemma, I have a ride. Actually the report stated they will not release a patient after surgery unless it's a friend or family member. No bus or cab or shuttle service is allowed.
Well guess I better get to sleep. Have to be up soon. In pockets for everyone scans or life in general support.
Laurel
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@irishlove I will be in your pocket for you endoscopy. It is difficult when appointments are changed to be earlier, especially if you are not a morning person. I am similar.
I did sleep well tonight, no thoughts really bothered me about the brain necrosis. I have mostly decided to let it go and came up with some positives. One is that the stuff is still in the back of my brain which is not responsible for a whole. Never had symptoms of the big necrotic cyst and if anything else comes up, I will be told then. Perhaps if it is months down the line my mental attitude toward another surgery would change. I do know if I did no more laxative from nurse, let my body eliminate waste on its own. I will decide when and if more necrotic junk comes, if there are no symptoms, just leave it alone. I should also not pay attention it now, let it go in the flow of all my cancer troubles of the past and let it go to the future if it is meant to go there. I mean that not every post coming after this one is mentioning necrosis. I need to put a kibosh on it all.
One good thing about the whole hospital appointments is I am in bed more like 10 to 11pm vs the middle of the night and house is much more organized looking. SIL did a solid on that one, DB did most of the driving so they both did a lot for me as well.
Other than that looks like it is going to be sunny, still very cold but that is fine, I will still stay in.
Food will likely be the rest of the garlic bread, eggs and eggs. If I feel like it, will make up some rice to go along with or some ramen. Beans are another order of the day and will continue to buy canned potatoes as part of mealtime. If I have something fantastic I will post it.
I hope everyone has a good day, plopping myself in everyone's pocket as well.
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@irishlove - So sorry they changed your appointment time. Those earlier times can be difficult for a lot of reasons. When they switch on me like that, I usually just say no, and that I'll reschedule instead, but sometimes I'll go ahead and do the time they want. Anyway, I am sending crossed fingers, good wishes, and hugs 🤗, and putting all in your pocket! Have a successful day and a very restful night.
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@mara51506 just sending hugs your way.
@irishlove in your pocket for tomorrow
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Good evening all the lovely folks here. I'm super sleepy, so I'll keep this short.
Everything went fine today. On time, no problems with anesthesia, wonderful care. Dr. mentioned that he took four biopsies, but didn't say where or why. Someone said that's normal, but you know how you jump when someone mentions biopsies. I sure did. He was out the door before I could collect my thoughts and ask why. I did ask if he saw any cancer and he replied no. So I feel pretty confident all is good. He stretched my esophagus. He also wants me to set up appt. with speech pathologist and barium drink. They called from that office and I told them I just got home from the hospital and I need some down time. Whole lot of appt. in the next two weeks.
I hope everyone here is safe, has heat and plenty of food to get by. Our kids in Charlotte are stuck due to ice. DS took a fall on the steps of work. Landlord did nothing to help so he salted. Doesn't look like it did much good as its a thick layer of ice and temp are too low.
In pockets for all my friends and thank you for your continued support.
Laurel
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@irishlove I am sorry to hear abbout DS, I hope he was not seriously injured. I gathered that most places below Michigan got quite a bit of freezing rain and that is dangerous for trees power lines and such. If places are not used to this type of weather it is tough. We are still covered in snow, no loss of power or exploding trees happening here.Glad no cancer seen and glad you will take time off.
Nothing on the agenda beyond laundry, sweeping and a quick multifibre mop. Floor looks dusty from shoes having been outside, quick fix for that with a sweep and mop.
Need to check cancer clinic for appointments coming up. I will view treatment differently than I have. Treating neck down makes sense, no mets yet. Brain will be day by day. Necrosis can present with similar symptoms of brain mets. There is no exercise to restore the brain cells that have died but perhaps I need to start more exercise so the cells still alive back there can rewire themselves. I will repeat the positive fact the location of original mets and subsequent necrosis are not in an area that does much like mobility, speech and memory. I also realize that nothing may not be needed for a long time and when the time comes, decide for myself what I am willing to do, not willing to have longterm steroids or surgery again.
I need to get on the treadmill or march on the spot for more exercise, music will boost my overall mood which has been low for most of January. Music and movement will be helpful.
Not sure what to have. I had a bad supper last night. I am not a soup sort of person. I had roast beef and veggie soup but really disliked the liquid. I think if I am to attempt a soup again will rinse out the stuff in it and lose the juice. Mix the other stuff in with some good hash browns eggs etc. I may also thaw some cheese from the freezer. I do it in cold water for maybe a half hour, allows me to use quicker. I am also enjoying peppers and may even get a couple more bananas. I put those in a smoothie with yogurt and fruit punch mio. I have also been known to put lentils in same smoothie. Red peppers seem appealing as well.
Enough about me, need to finish up laundry chores and get started on meal prep. I will post if I have something really good. I want everyone to have a good day and in pockets for all.
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@irishlove - So glad to hear things went well yesterday. When I had my endoscopy he took 5 biopsies, and no one told me it was normal. I thought he did it because I was a cancer patient. Good for you for telling the next appointment people that you're tired and need some downtime before scheduling anything more. I totally get it and I think the "medical system" needs to hear more of this from more of us. Too often some of us can feel like wanting to comply, wanting to make things easier for the system (I know I do), when it is to our detriment. I think it's only from us putting it out there that we are just too tired, too sick or whatever to "jump to it" that the message will get across that we need some good flexibility while we deal with this disease. I'm not talking about being angry and demanding, but just politely letting them know you might not be up to something for awhile or at all. Again, so glad that all went well, you are feeling ok, except for being tired (so understandable), and that things are looking good and up. Sending another hug 🤗.
@mara51506 - Funny about the peppers. Maybe it's the time of year and there's something in the air? I've been really liking peppers a lot too lately, and just bought myself some more yesterday. The red ones have really been hitting the spot for me, and I've been adding them to most things I cook, but most of all, I'm really enjoying them cold and raw. This has all come on seemingly out of nowhere.
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I did do a Walmart order for groceries. Got plenty of yogurt, sour cream, queso, both crema queso and jalepeno. Got a few beef and macaroni frozen meal, I love those. When it all arrives, I will eat some of the beef macaroni at lunch time, have. It is already on its way to me, I placed order around 1015 am.
All my stuff arrived, got 4 of the beef macaroni, will add some of the beefless ground there may be left and some leftover soup I did not like, I rinsed the liquid off the soup and only have a few veggies left. Will put those into the frozen pasta and beef, heat it up and bind with queso and sour cream cremas. I have cheddar and sour cream chips that were on sale as well. I am sure it will be quite good.
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Had a chuckle earlier - called a roofing company to inspect my roof (no leaks, thankfully, but it's getting older), and they said it doesn't need to be replaced, no soft spots, still feels really solid. But suggested a silicone membrane type of substance that was guaranteed for ten years, or for twenty years (the heavier-duty stuff).
So, huh, the likelihood that I'll BE here in 10, let alone 20 years...I did start laughing, which I passed off as delight that the whole thing didn't need replacing.
How to even make these types of decisions, with this diagnosis hanging constantly over me? Guess I'll go for the 10 year option, costs less. If my roof starts leaking in 10 years and I'm still here to feel drops of water on my head while sitting on the couch...I promise to start laughing.
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I'm with you. I try to set things up for the best possible effect on my family. It will be my parting gift.
@sf-cakes Thanks for the grin - I needed it. Fourth day post snow storm and none of the walks are passable and roads have only been plowed to a one car width and are icy, so walking there is a hazard. We live in a housing community and the contractor responsible for clearing ice and snow has been awful.
Agree wholeheartedly about medical staff being oblivious to the needs and concerns of the patients. Have experienced that many times since my initial diagnosis. Had outstanding compassion and kindness from my radiologist during my cyberknife treatment. In looking for a saying to include in a thank you note to him, I found the following: "A good doctor fits the patient to the procedure. A great doctor fits the procedure to the patient."
Keep thinking I should make copies and hand one to every doctor I encounter.
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@sf-cakes that kind of question is a big part of what caused me to change dentists. My previous dentist, who knew my dx, decided to press me on straightening my teeth (they're not perfectly straight, but they're not bad at all - and I was 60 at the time). At that point, I felt more like a paycheck than a patient, and decided it was time to move on.
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sf-cakes, I paint with watercolor. I’m out of a couple colors and can’t decide whether to get the normal tubes or the small ones.
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