My Husband, My Life, My Love, My Family, My Cancer
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I always stock plenty of "Tide-me-over chocolates" in my pantry. Current inventory: Dark Chocolate Covered Mangos (that I like to pretend are fruit), hershey and twix miniatures that I pulled from my Halloween candy before distribution, Ghiardelli caramel squares and Chocolate bombs. Can never be too careful in case WWIII starts or some other disaster 😘.
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Sondra, I have a lot of tide me over chocolate, that is certainly for sure.
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@intolight Yipeeeee so happy for stable! We all needed some good news.
snowdrop Sorry to hear how difficult the Y90 was I hope your discomfort lessens each day. Sending positive vibes your way that it did the job on the PVT. In your pocket today with warm cocoa and a big comfy blanket.
Mara Glad you enjoyed your bday dinner and ending it with chocolate is right up my alley!
Irish Hope you are feeling better. Good news on the new MO sounds like your off to a good start.
sondraf Glad to hear your healing is coming along and in the right direction. Love your attitude, yep..just keep swimming! Hugs
Goldens In your pocket for tomorrow ,sending good vibes.
Oh ladies ..yep gotta have the "tide me over chocolate" in the house. If I don't have any I am in my baking basket digging for the semi-sweet chocolate chips! They always do the job!
Quiet week here just follow-up appts tomorrow with MO and endocrinologist for labs etc. Finally feeling like November weather here with the first frost overnight. Thinking and praying for all in the room and those peeking in from afar.
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Speaking of chocolates, my hubs orders Lindt chocolates by the box full. I’m talking 300-400 at a time, a mix of different flavors. He will have 4-5 a night with red wine while watching tv. Our middle grandson, who happens to have a sweet tooth just like grandpa, was astounded the first time he saw the box of candy that arrived. His comment, “I can’t wait until I’m an adult so I can buy candy like grandpa”😂🤣😂🤣😂🤣.
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@cookie54 I always keep chocolate chips in the pantry and have to refill them often. They are my chocolate fix when needed. I was good this year and stayed out of the Halloween candy. We only had a few left over. Goldens, what a great idea! I could do that… Will be thinking of you today.
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I am still working on my chocolate as well, will take a while to get through it but that is good.
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Hi Mel! Thinking of you, and hoping you are good.
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oh my goodness.. chocolate. Dark chocolate with a high cacoa % is my favorite . We keep dark chocolate covered almonds and small organic choc bars in the freezer for that go to anytime snack pick me up. And I make almond butter oat chocolate energy balls which are no bake and soooo easy and yummy . I also love baking chocolate chip oat and almond scones . Never thought to snack on those choc baking chips… what a great idea lol.
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There is a brand called Forest Feast here that does premium salted dark chocolate covered almonds. I swear to god five of those singly handedly raised my potassium number one month into the normal range. So now I keep a bag or two on hand at all times. Oh they do a peppermint cream dipped one too! May have to order some nuts!
https://forestfeast.com/collections/chocolate-dipped-nuts
I love a dark chocolate bar (70-80 pct range), but a little salt makes it even better. Lindt does a nice one. I actually lost my taste for chocolate for a lot of this year and its only come back in the last month or so and now Ive got candy all over the place - dark chocolate mint fondants are my favorite and one of the grocery stores does a cheap every day version that works. I really dont like truffles or pralines and that seems to be what most Belgian chocolatiers pride themselves on. But enough also make some excellent selection boxes so we will see what we end up with!
goldensrbest- that sounds AMAZING - what fun when that delivery shows up! How do you store them all?
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Good morning, pretty cloudy. Checked the weather, snow will happen in the next couple weeks, planning to pull out my cleats, mid sole and the others, got the ice picks and if I think I need it, walk with two, I will also pick up my own ice melter, if building supplies it then I will use that first but I will pick up the kind safe for concrete, grass and pets. I like having my own salt so I can make a path for myself when getting paratransit but make sure no dogs can get sick.
Not doing much, did some budget boosting initially then want to finish laundry, had it soaking a bit and figure out breakfast. I did manage to finish the frozen stuff stored in fridge, was just frozen lasagna. The first one was gross because I put so many beans in, did not enjoy it. Threw the rest out. Second one was quite good because it was simple. Added sour cream dry seasoning, little bit of garlic and a bit of shredded cheese. Cooked in microwave 3 mins 30 seconds. With the seasonings, I enjoyed that a lot more. Now everything that needs to be frozen is in the freezer, it is still taped up so those foods take priority in the using up process and I am still going to make sure I stop restocking before it would run out, does not help me to have no room. Same goes for pantry staples, need to plow through those as well. Did purchase some free wet food with budget boosting money, leaves my own wallet more full. The tv ads that are paying me feature pasta and it always makes me feel hungry. After all, it's not just pasta, it's Italpasta. 😄
I did make a decent breakfast meal. Took 1/4 cup of canned black beans, some frozen spinach as well. I decided to chop in a handful of zesty cheese Great Value chips and a handful of of croutons. Makes more of a dry but still ground beef sort of texture, my favourite kind and added 1 chicken mini pot pie as well. Heated all in microwave 1 min and 30 seconds, added a spoonful of caesar dressing to avoid dryness and mixed with salt. It really was good, mostly picked up on the chip flavour but was very nutritious to my mind with the black beans and spinach. Later am thinking of a rice, egg, bean and cheese meal. Decided I want to make sure beans are used up within a couple of days. Last batch started to turn smelly.
I do hope everyone will have a really good day, thinking of Mel, Sondra and Carole and in pockets for everyone as needed.
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Well, had myself a good laugh. Apparently I am supposed to have an MRI at 3 am on Monday. It is funny because I do not drive and no transport there would mean walking or be almost 40 dollars for cab there and back. Unaffordable. Other reason is I am supposed to have daytime appointments. I will simply call tomorrow and change the appointment, if they don't or won't, I will not attend said appointment. I will have to get a printout of upcoming appointments.
One nice thing about my brain, it doesn't get as upset as it used to when an appointment was booked outside of hours. I used to get really angry but when I know my response will be getting it changed or not going, the problem will be solved. It has always been noted in my chart that I am daytime only as well.
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Sorry, did they really schedule an MRI for 3am? Like for real? I mean there is working machines hard and optimizing but wow!
My run of bad luck continues - November's drama has been revealed to be drum roll please another bout of interstitial lung disease! Yay! So Im off Enhertu for the moment and on super high dose of prednisone. It was caught very early - I had a little phlegmy cough start Monday morning but knew anything would be picked up by my lung-check CT already scheduled for Wednesday and it was. I was hauled in ASAP yesterday to the hospital urgent care center to get IV started of the steroids (and a bag of potassium cause they love to do that to me), boxes of prednisone, and a quick chat with oncologist. I recovered very well in no time from a pretty bad state (at least imaging wise) with ILD in February so feel confident (this is more cautionary due to risk of death), and I guess four weeks of steroids will feel great on my hip and maybe I can put some on more weight and grow more hair.
How convenient there are twelve rakes - my 2024!:
I could tolerate every rake to the face if I could only move and travel and be a part of society. Instead I guess Ill just keep wish-shopping (or actual buying) really good chocolate. I cant even do the wish-planning of trips, its too depressing. At least with chocolate I can research and buy and try and enjoy. Even if it may be in truffle form :)
Its 530 am and a ham sandwich sounds pretty good. Guess Ill go make one!
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Mara That is crazy 3AM lol. Why is that even an available time slot to schedule in,,,interesting. Glad you no longer stress over it as we know it will all work out.
sondraf Cmon!!! Ugh unreal with this string of unfortunate events. I'm sorry it means another break in treatment. You always look at the flip side of things which I admire. Agree hope you get at least the perk of relief from hip pain, hair and weight. I'm with you I would be spoiling myself with lots of chocolate treats for sure! Hoping you get past this quickly and get on a good roll with things. Big hugs❣️
Quiet day here probably more leaf blowing. Celebrating an Eagles win last night! Although it wasn't very pretty they got it done. Had two appointments yesterday which went pretty well as long as my labs behave.
Waving hi to all here, hope it's a good day for all!
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Sondra-This is horrible! Keep on trucking-that's all we can do. Hope the Prednisone zaps it soon and you can get back on Enhertu.
Mara-I can't believe they would schedule an outpatient MRI for 3 AM!!! In hospital-yes-I've had those very odd hour scans but that's insane for an outpatient. Hope you were able to get it rescheduled.
Nothing new from me at the moment. I just got a last minute preaching gig for Sunday to help a sick colleague and am working a football game tomorrow, so I guess I better get down to work!
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Cookie, just rescheduled the MRI, will be on the 28th this month, got an afternoon app't. I have had a note on my chart that I need to be there same hours as cancer docs which is weekdays until 430pm. Reason is, if my vein is not working for the contrast, they need to do port access which requires a doctor to approve. They used to access my port, I would go to appointment and then go back for deaccess but they won't do that anymore. Oh well, got the change, no point in worrying about it anymore. Just gets tiresome to have to explain that notes should be in chart to RO and other people looking after booking the app't. Oh well, joys of having MRI regularly.
I am unsure what I want to do, was quite rainy yesterday but just cloudy now. Part of me still wants the prescription and to check out the grocery store as well that just moved in across the street from the hospital. Just a smaller discount store called No Frills. If I do this, will get leave before noon. I could also take bus, regular one part of the way but I have been able to mall walk for longer than 20 ish minutes so I will see how I feel. I may choose to have prescription delivered today as well, need to phone soon if I do that. Laundry on the go, I accidentally filled washer with a little too much soap, not much more than usual BUT since the washer agitates at a high rate of speed which is great for stains, also good for creating suds. I spun dry the items to remove some of the soap, need to use my shower head and drain the suds out.
I had very good food yesterday. Lots of beans featured in both meals, last meal had rice, eggs and cheese. I have decided to always chop in croutons, chips or cheezits so the meal appeals more. I am obsessed with texture, don't like chewy beans. Also need to use up my broccoli, cabbage mix as well, will get that figured out later. I even like taking a regular bowl, spray with cooking spray, add and egg and beans or whatever I want and then microwave 2 min 30 seconds then put in chopper with croutons, chips or whatever I want as well. I still have meat pies, 3 of the large ones, thinking of baking one of them up, let it cool and add to meals and taking box of KD in order to just use a certain amount of noodles and keep cheese seasoning in a container. Could make up a 1/2 cup serving of precooked macaroni, add an egg and chopped beans with the stuff I like to use. Warm it up same way I do the frozen meals, add egg on top of cooked noodles, beans and then just heat up in the microwave. Mix up some cheese seasoning and other seasonings and add that together. I will have to see about all that as well. I like regular KD but figure it is better to add the pasta to meals as needed.
Enough yapping from me, got the app't changed and prescription will be delivered, not interested in walking in the rain, will wait until tomorrow to check out the new grocery store, can walk there as stated above, the mall walking plus the cane makes me feel quite comfortable.
Hoping everyone has a good day and in everyone's pocket who needs me.
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Chicagoan, good for you on the preaching gig. I am happy to hear that for you. Yes, the app't has been rescheduled for 10 days later which is fine, it is not until the afternoon and I can book Paratransit as needed. Herceptin is the day before so that makes it convenient for that week.
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Sondra, I am so sorry you are having to deal with more meds and lung disease and all of that. I don't blame you with that picture of walking into rakes because all this is exactly that. Glad you are testing chocolate, test some for me as well. In your pocket for this nonsense to settle down, cannot speak for you but I would be really cranky myself dealing with all that.
Mel, Candy and the other readers, in your pockets sending warm thoughts to you as well.
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@sondraf Sending hugs as you recover from another bout of lung issues. Praying the cortisone works well and you can find a place of rest in the midst of this latest storm.
@mara51506 3am for outpatient? Really? Ughh!!! So happy you were able to reschedule. Good for you for tackling this latest hurdle.
@chicagoan I will be praying for you on Sunday. Good for you for having the strength for this.
My DH and DD will be getting the Christmas decorations down today. We have to do it when we have decent weather and before the ground freezes. I know it is early, but it is how we roll. When you think about it, Christmas is only a little more than a month away. I have been furiously working on some crochet Christmas presents and just ordered more yarn. If you are a yarnie you understand! It is where I go for stress relief.
Praying for Carol and Mel as they take care of themselves to find their personal place of peace.
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Intolight, right? Yes it was easy to reschedule, I don't accept anything that falls outside the requirement that cancer docs are there to allow the chest port access. I will ask MO who I believe is my next appointment whether I can just make app'ts to get chest port accessed before and after an appointment. They used to do that but don't any longer.
I did make an interesting breakfast, did the whole putting an egg in a sprayed bowl, whisked around a bit then just put 1/2 cup black beans and some potato cubes. Heated on high in microwave for 3 mins 30 seconds. When a bit cooler, cut the almost one piece dish then dumped into the chopper. No croutons or chips, used rest of some cheezit extra cheesy and just chopped up, put into the same bowl I used before, heated for 45 seconds. When it came out, added sour cream and onion dry seasoning, little garlic seasoning and salt. Added some sour cream to use as the binder and mixed all together. Really quite nutritious and I enjoyed it a lot. Also did not create too many dishes for me either. Probably high in calories but I only eat a couple times a day so not too concerned about it. Keeps me satisfied.
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@Intolight-Thank you. I appreciate your prayers!
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HI all. Sondraf, I can't believe your meds have done this to you. How wise of you to pick up on it early. Nice thing about prednisone, you get your housework done thoroughly and timely. lol. Been there and cleaned the bathroom grout with a toothbrush.
chicagoan, sounds like the two most wonderful events to participate in. I'm sure in will bring you joy.
intothelight I see winter storms are coming early, to a number of places with plenty of snow. I think it's a good idea to get decorating before freezing temps. and icy conditions.
Mara, thank goodness you have the ability to advocate for yourself. Sometimes what these medical facilities want is outrageous. Don't you just wonder how they would feel if they had to walk half a mile in your shoes?? I can tell the nurses that always place the patient first and care deeply.
I think we will be having Thanksgiving at the hospital restaurant. It's more than a cafe and Mr. Floyd sure can cook! Since it's just the 5 of us, I don't want to cook till I drop over. Quite reasonable for meals and so very good. Maybe do cornish hens for just DH and myself on Thanksgiving.
I'm assuming the swelling in my ankles is from meds. I can't stand too awful long and am looking into those compression boots. Doubtful Humana will pay for them, so I'm not going to go to the PCP and ask for a referral that will take months. The colitis has caused severe dehydration and MS is causing deep nerve pain. I had a lovely morning going to get labs and lunch and then the pain meds wore off. Here's to tomorrow and in pockets for all your needs.
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Hello all. I continue to read along to see how things are going with you all.
I have my routine scans (every 4 months) this upcoming Monday the 18th, with my MO visit for Labs and results on Friday the 22nd.
Question for the group: Some background… I have the patient portal, which is nice, but yesterday it showed a note put in by my MO's nurse that she had spoken to the radiology department about my upcoming scans. The rad department had reached out to her questioning what area of the abdomen are they looking at with my order for "MRI abdomen/pelvis". She commented back to them that we are looking at the liver, as that is where my mets are in the abdomen area. And now the order for the test says "MRI liver". So…. I messaged her that Yes we are looking at the liver mets, but I wanted to make sure we see the whole abdomen for a good look-see for any brewing problems.
So, my question to you all: When you have your routine scans, for those that are doing stable, does your MO order tests, or comment on ordering tests, that look EVERYTHING over? Your trouble spots, but also to make sure that the cancer is not spreading to a new area?
Also, I have been with this MO for 1 year, and I am not a fan of his nurse. She seems to have a chip on her shoulder when I asked her anything when we are in the office face to face. And she did not respond to my message yesterday about the scans.
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Candy - Good luck with your scans on Monday! I'm sorry that I can't answer your MRI/scan question. Whenever I get mine, either CT or MRI, they just do the whole abdomen and note anything "remarkable" there. I don't think I've ever had the dr, much less a nurse, request anything in particular, just an overall view of the area, and I do have some "suspicious" lesions on my liver that they are watching.
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Candy, my routine CT includes chest, abdomen and pelvis even though I’ve only had a single bone met in my body since diagnosis (8 years ago today).
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Candy, I will be thinking of you during your scans Monday. I recently had an MRI of my liver. The results noted surrounding organs also (they were unremarkable) so perhaps they are included anyway just not the focus? I am not sure. I think it strange that a nurse is involved to that degree or maybe she is just the one doing the communication between the tech and the doctor. This may not be any help but it may be something you can ask when you go in. I had multiple mets in my original diagnosis eight years ago including bones (pelvis, hip, femur) and liver which are all now resolved so maybe they include it all from my history. I think it is a good discussion to have with your MO.
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Candy, my CT scan is always chest/abdomen/pelvis. Then I have a head to toe bone scan.
The times I've needed an MRI, those orders are more specific, such as "thoracic spine" when we were looking at how bad my vertebrae fracture had become. I wonder if the MRI scans specifically are more targeted, if that determines which sequences are run?
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Candy - the liver MRIs I have had look more intensively at the liver (all that breathholding for specific views). When I had pelvis/abdomen MRI years ago to look at my uterus, it was less involved - no breath holding and I actually fell asleep during the scan.
Here are the non-liver observations from my last scan - they seem to include most, but maybe not all of the abdomen.
Gallbladder: Within normal limits. Biliary Tree: Within normal limits. Pancreas: Within normal limits. Spleen: Within normal limits. Adrenals: Within normal limits. Kidneys: Within normal limits. Bowel: Limited evaluation. Within normal limits. Aorta and IVC: Within normal limits. Lymphadenopathy: No enlarged lymph nodes. Skeleton: Within normal limits. Other: No intra-abdominal free fluid.
As far as the grumpy nurse - I wonder if you could ask her if you've done something to upset her. Assuming you haven't, it could wake her up to how she comes across. Alternatively, she could tell you how you ticked her off. Lol. Just kidding.
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Candy - given what Seeq says about the breath holds, during the abdominal MRI, I could have been wrong above, when I told you they hadn't looked for anything in particular when doing the abdominal MRI. I did do breath holds, but assumed they were part of a routine abdominal MRI; didn't know there was a difference. They wanted to see my liver, but also everything else, and as above, they are monitoring some suspicious lesions on my liver. They just never made an issue of it, just ordered what I assumed was a "standard" abdominal MRI. It was however, to follow-up on an unclear pelvis/abdomen CT.
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@candy-678 Yes there are specific sequences run for MR Liver however other abdominal organs are visualized. If they order MR Abdomen you will see all abdominal organs but techs won't do specific liver sequences. MR is superior to CT in looking at liver mets .
My routine 3month scans are CT Chest/Abd/Pelvis even though mets are in the lung. Depending on what pops up then of course then I have an MR etc. My MO has mentioned to me that maybe we would eventually drop abd/pelvis or space scans further apart if I am ok with it. But like you, I would rather make sure all is ok. As far as the nurse goes maybe oncology isn't for her. We have a say in what is being ordered etc and she should respect that.
In your pocket for your scan and stable results.
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Thanks all.
I too do think we should have a say in what tests are ordered. When I messaged the nurse with my concerns that we need to look at all organs, not just the liver mets, I did comment that Stage 4 patients live from scan to scan. And that when we get a good scan we are very relieved. That we assume that stable means not just the liver mets, but all the abdomen.
I would hate to have something pop up in, say, the pancreas and we didn't catch it early because the radiologist says "we were looking at the liver tumors, not the pancreas". Know what I mean?
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