My Husband, My Life, My Love, My Family, My Cancer
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Sunshine and Intolight - Best of luck to both of you with your shots! I like the idea of "group shots day". Lol. Intolight, that rest of the family going to the pool business does sound unfair! It seems like the pool might sooth your shot locations afterward. Maybe you could meet up with them at the pool later?
Sunshine/Carp, my heart goes out to you with all you've been experiencing and I am in your pocket with fingers crossed for sure. I am wishing you nothing but the best of luck with all you have on your plate right now. Here's to a new treatment plan that is successful!
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The mini grill is a lot of fun, I will use it mostly for burgers though I can take some of the beef and mix in egg and beans and cook it all a couple of times. Will need to use all 3 mini cookers I think to make a complete meal but that is fine.
Heatwave finally broke, thinking of going out for a burger tonight, walk over to the burger joint, priced out a burger, no onion rings or pop and even with lots of toppings, would only be 5 bucks. Eat at the restaurant and make my way home. We will see. No reason not to and would get me used to walking outside. For the daytime meals would be having a quinoa bowl, precooked quinoa, couple cooked eggs and some beef cooked up. Not sure how much beef, that would be quite filling.
Got an email from my apartment managers, they are apparently putting in AC in the building. I will not bother to ask but I wonder if this plan includes me as I am the last apartment in the building still on the grandfathered plan and not renovated meaning in suite laundry or dishwasher. I am curious to find out, would be good for the other residents though. I will find out shortly. Going to keep an eye on the landlord tenant act as well due to the fact that upgrading the building may give them the right to start charging more rent or include electric.
Update, emailed the landlord and asked my questions informing them I am the last apartment not renovated, if they are going to expect utilities paid after said upgrade since my original set up was for rent including utilities and if I can refuse the upgrade since I have AC. Hopefully I get an answer and if utilities or rent go up, I will fight those. Would be a shame to have to pay utilities because that eats into my budget significantly but have to get off the ledge as my anxiety is kicking up and I need to take it a step at a time. Get some answers first. Thinking about advantages to having an AC system in here, how I could do laundry for less money scaling back groceries and other purchases, I can go pretty low, got my TV running ads while the TV runs since the app goes in the background. This might be an interesting challenge for me to undertake, lowest amount of energy used. My wee cookers all use maybe 300W and take very little time to use. It may also be that if landlord needs to meter my unit, it could be for a future tenant, I have no idea but coming up with ideas to conserve is fun. Might as well make it fun for myself to find out if I am affected and what effects there may be. I can be super frugal as needed, we will see.
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Update. Workers came in and installed an air unit in the living room above my head. It is one of those AC split I think it is called mini split and the hole was drilled in the wall, unit itself is 12000 BTU. I will keep window AC but shut it off during day and shut off or turn up temp on living room at night so won't be so hot during day. No idea of utilities meter being installed so that is fine. It will be finished toward the end of this week.
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Mara, I hope you enjoy the mini split. DH installed one in my beach bar and we’ve been very impressed by how well it heats and cools a small space.
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Mara So glad you got the mini-split. It does a great job cooling the apartment we rent for the summer. You are amazing with all your creative ideas to make things work.
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Cookie, I did not find out until today the building was putting them in. I saw the email, chatted with my SIL about it and then someone was at the door, they put the unit in and then drilled a hole in the wall I guess to feed it to the outside. Probably will be working by end of week, another pro, got the back section of shelves behind couch cleaned off so there is more storage under there. Only thing that has me puzzled, since I have a window AC and sleep with bedroom door closed, probably will want to keep living room warm or turn off the unit in the living room. I shut the door as I cannot sleep with cats up and down on the bed. I am reading up on how to efficiently use the split and the article recommended another AC in another room. We'll see how it goes, apparently, it should be set at a consistent temperature so a warmer temperature in here would not be bad given that it would no longer be humid and the cool air comes in from the bedroom. I will find which works best for me and as far as possible be efficient with both of them. I will say it will be nice not to walk into a very warm room when I get up.
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Ugh, think I may have actually picked up a stomach bug or something but Ive been having giant D the last day or two and then woke up this morning to dry heave. Onc pulled chemo yesterday, ordered stool sample, got me a stronger anti-D, and I got some fluids but for the most part I feel pretty exhausted. On the plus side, two weeks off chemo!
Then of course the cat fell off a fence or got in a fight and needed dental attention so yesterday hubs was running the cat to the vet on the bus, ordering me Ubers to the hospital, picking the cat back up after his surgery, etc. Its hottest day of the year today and we cant open the back doors/windows because boy cat is not allowed outside for a few days. Hes bummed and we are all hot lol. He also cant have kibble but clearly wants some - this morning I woke up to what looked like his sisters feeder jail breaked, with the empty kibble bowl outside (they each have their own, which open based off their microchips in their necks so he may have got in there quick before it closed). Hes also an outside bathroom user so reminding him of the vacation set up with the box in the bathroom is not helping either. Im going to smoosh up some cooked shrimp later as a treat for him,better go defrost them now!
So yes, heat - going to be almost 90F today, although thankfully the bedroom Im in stays relatively cool as it only gets morning light and the garden is almost all shade right now as we cant trim trees for a bit yet. With enough big fans and popsicles itll be ok. Hubs had to run up to Leicester to pick up a laptop - a journey of 50 miles that will take all day lol. Lord I hope none of his trains break down - its the Big Game this evening so folks will be drinking from noon and its going to be hot and messy out there.
Off to try and rest some more, take care everyone!
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think I got a bug Friday. Been in bed since! Yuck. Feels like the flu. Feel better. Love to all.
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sondraf Sheesh! That's way too much going on at once. Hoping for safe travels for DH and a better day for all. Feel better.
Mel Ugh you too?? Hope it's on it's way out and you feel better today also.
Mara Agree you will most likely need the AC in bedroom unless it's in the same area with the mini. Yup with the cats and your peace probably better with the door closed.
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Sondra and Mel - So sorry about the bugs, and hope you are both feeling much better real soon! Same thing happened to me about a week or two ago, and both onc and I thought it was a touch of food poisoning from something I ate. Symptoms lasted a good week, but it did eventually clear up on it's own. Hopefully yours will too. I do think the drugs we take make it harder to throw things off quickly. Both of you take care and know that many of us are thinking of you.
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Sondra, I am sorry to hear about the bug and the D, hoping medication knocks it out quickly for you.
Mel, I am also sorry to hear about your bug, hoping rest will help, maybe some ginger ale to help with your stomach.
Cookie, yes, I think the way I want to run them makes sense. I read that the split AC system runs better if entire place is cool. I will be excited when both are working together. We have some relief against the over 100 degree temps but it is still humid.
I am still happy with the organizing I was Forced to do yesterday after the men were done, makes it easier to pull out the couch and dust the shelves and actually put lesser used stuff behind the couch for more storage. Win. Laundry and a robot vac, dusting in the places it cannot get
Planning to stay home this week so I can observe work done for the split AC at my place. Doing my TV and games for money, never get much but every bit counts. I got pizza and fries last night so going to cook up some beef in the mini grill and figure out meal combos. May make some rice, cut up the pizza and I am not sure from there. I got fries with the pizza so they can go elsewhere. I need to use up the sliced cheese I have so that may be chopped in with beans and croutons to use with the rice and cheese. I will decide later, small amounts of each.
For the sick people in your pocket with antinausea, diarrheal or whatever meds would assisst, gingerale as well. I hope everyone has a good day. In my own pocket to get stuff done.
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Very sad - The Ibrance thread is noting that Spookiesmom has died.
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Today, something is being done to send electricity out to the Split AC unit so got electricians here today. I am thankful I trimmed my hair so it does not look strange.
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Hopefully the electric work for today goes quickly, ladder blocking access to kitchen and you can imagine how that is for me, another hole, they are doing something with the circuit breaker board to feed wire though the outside. Interesting. Listening to music to pass the time.
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I’m sorry to hear about spookiesmom. Such great ladies this beast takes, it has to be gotten a hold of. Too many people die from cancer. Such a shame and such a loss. I didn’t know her well but remember her from when I started here. On the ibrance thread. I hope somehow, her family can find peace.
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I remember spookiesmom as well, very sorry to hear this. My condolences go out to her family, friends and those here who also knew and cared about her. Yes this disease is a beast.
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I seem to remember that both Spookiesmom and her husband were dealing with cancer at the same time, and that he died a year or two ago. When I first met Spookiesmom, it was one of the first times I encountered a situation where both the husband and wife were dealing with very serious medical issues together. I'll remember that little picture of Spookie too!
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Spookiesmom, who loved cats and Christmas. Stay warm, wherever you are.
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Vale Spookiesmom. This thing is truly a serial killer that delights in the anguish it causes. As I was sitting on the loo (toilet) thinking about the amount of chilli that one should include in a chilli prawn recipe, I imagined every little bit that was emerging landing on cancer. I am afraid my mind can be somewhat different - apologetic face.
@mara51506, I hope the split system works well for you. I am too weak to exclude the kitties from my bedroom - the nagging and scratching at the door defeats me every time.
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May Spookiesmom rest in peace and fly high with the angels pain free.
So so tired of this nasty ugly awful disease and all the suffering and death that it brings!
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I am looking forward to it and the cats will be more comfortable as well since it is so warm coming out of the bedroom. As far as shutting the bedroom door, all I hear is rain overnight so don't hear the cats, when I wake up to pee, I usually feed them as well and they are fine until the morning. Hopefully will be done by the end of this week since Monday is a holiday. I am not sure about whether or not anyone is coming into my apartment today, the electric is not fully done and there is still work to be done on the unit itself.
Will be doing some laundry and possibly a strategic Walmart order, need eggs etc. Got to get more regular stuff as well, may open some canned chicken and grill it with rice and eggs. Have to get a can of turkey out and possibly grill it, did not like grease from hamburger meat but that is OK, could possibly grill chopped beans, beefless ground and cheese fashioned into a small burger that gets cut up, need to be cooked several times and cut up on aplate but that would be fine. Paired with white rice, pre cooked and then add some garlic to the rice and cook it in the mini pans for maybe 30 seconds, no need to burn but would be a very quick fried rice. Finally learned online how to properly make quinoa so it does not stick to bottom of pot. I was leaving the heat on the whole time but read it should be turned off after may 10 minutes. Interesting thing I was not aware of.
I hope everyone has a good day and I am in everyone's pocket who needs me.
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Turned out to be a c. diff infection and I got antibiotics. I KNEW that was going to happen after they kept dumping antibiotics into me for no reason at the hospital in April. After I clear this its time for a solid probiotic to level things out, so if anyone has any good ones from the US let me know as I can get them in a few weeks. So SO annoyed, this is so avoidable like everything else but no, lets practice 30 year old medicine.
I saw the spookiesmom news and will also miss her little photo. May she rest well and in peace.
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Sondra - I am so sorry for what you've been going through, but also so happy that they have at least figured it out. That C-diff is nasty! Over the years, I've worked with a lot of nursing home residents and it is nothing to fool around with.
I take Verzenio and it can cause a lot of D and general stomach upset for the majority of people who take it, and over the year I've been taking it I have been very thankfully spared the digestive nightmare that many experience. I have chalked it up to the fact that I eat a bowl of probiotic yogurt with 1TBSp flaxseed, walnuts, and banana every day (did long before Verzenio). I also have about approximately half a cup of fresh probiotic sauerkraut every day with my lunch (also started doing way before Verzenio). The sauerkraut has to be fresh from the refrigerator section, with probitotics, and not canned, etc. Between these two things, I've done pretty well in the digestive department. I do get some bloat and generally stomach "blah" a lot, but not major trouble. I used to take an over the counter probiotic that seemed to help years ago, but I cannot remember the name of it. I only do the "natural stuff" from real food these days. I have a friend who has stage 4 lung cancer and her husband has been living with stage 4 esophageal cancer now for about 10 years, and they both swear by the over the counter "Align" brand of probiotics. I tried it once but got a lot of stomach upset, so stopped. Maybe it would have been temporary? Maybe it didn't mix with my yogurt and sauerkraut that I was already doing? I don't know, but it wasn't for me, but again my friends with cancer have been very please with it.
(I think the probiotic I used to take is now called "Culturelle", but had a different name before. It did work OK, I just gradually drifted away from it.)
Hope at least some of this is helpful to you and that you get better real soon!
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Has anybody here had an oncologist call them and want to talk personally, when it is "good news" that they have? I just missed a late afternoon call from my onc about the possible liver metastases that I have. He said he wanted to discuss the MRI results. Well, those results came back and were in MyChart last Friday, and according to MyChart, the oncology staff saw the results Monday afternoon. No one called or said anything at that time. This is Wednesday evening and now he is saying he wants to discuss results over the phone. He usually just adds a note in MyChart with the test results saying that things are relatively OK and he's not worried, etc., but this is the first time he has personally called like this.
I had had an abdominal CT that showed "slight increase" in the size of lesions that they had noted all year. This time the reading radiologist called it "metastases" instead of "lesions". To follow up and get a better handle on things, the onc had me get an additional MRI of the same area. The MRI reading radiologist stated that he was essentially seeing the same thing that the CT radiologist saw, only he thought things were a little smaller than the CT radiologist did. I'm hardly and expert at reading these reports, but my take is that they are seeing pretty much the same thing they've been seeing for months, with no real concern, and are now calling it metastases and talking about possible treatment for it. I don't know if the oncologist was calling just to confirm what they all said, or if he feels this is urgent or really bad or something. It's got me completely freaked out. He said in his voicemail that he would "have a (something unintelligible) team reach out to me" since we weren't able to connect. His chart note said something about trying to schedule a call for a mutually agreeable time later.
I've never had him call, and in the past, he has always waited for our appointments to discuss anything. I am seeing him next Wednesday, but he apparently doesn't want to wait. He also wrapped up his call with a very sympathetic sounding, "take care". Maybe I'm reading way more into this than there is, but I am a total wreck now. I have someone coming here for a good part of the day tomorrow to help me with decluttering/downsizing and I don't know if I should cancel the appointment now or if I'll be able to function tomorrow, whether I hear back from him or not.
What would you think if your doctor "unusually" called you in a situation like this? Thanks!
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@threetree My onc has called me personally going both ways. She has called to say it was all good or stable and we will just stay the course. She has also called and said she didn't want me to be overly concerned or scared with what the report said and that she will watch it. She has also called and said that there were some minor changes we can discuss at my next appointment. They know we see these reports on our own and I think they just want us not to panic or jump to conclusions either way. I have also been told radiologists use different words with what they see. It has to be a challenge to communicate with open portals.
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@threetree I have to second what @intolight said. I'd keep my appt. to declutter as it will keep you and your mind busy. I recall flipping out when I saw notes about mets in my occipital lobe. Never saw those notes before and the MO put me at ease by saying they were old, stable and not to be concerned with. Sometimes I think portal messages are a curse.
In pockets for all your scans and shots and needs in general. I hope they clear that C-Diff up quickly, Sondra. Today was a better day for me, not great but not nearly as much pain. "D" totally stopped from augmentin and now back to good ole constipation despite using metamucil. This is from MS not cancer, to the best of my knowledge.
So I got in trouble with teacher. Even to this day I hate to disappoint anyone. The MO chatted with me by video (still a temp. MO as they haven't hired yet-it's ben 8 months now). He said we will reduce the dosage of Ibrance to 75 from 100. Well, I called the office last week wondering where the 75 mg. was as it was time to start back up after a 2 week break. Guess I misunderstood and the nurse must have told him I'm a. confused b. a bit bitchy c. think I'm perfect. lol. When he spoke to me about this, I said there must have been a miscommunication. He dropped his head, looked a tad upset and shook his head. Maybe I should have said misunderstanding. DH thought I was correct but my BFF thought MO was correct. Bottom line I still don't hav the 75 mg Ibrance and it's Wednesday, was suppose to start Monday. I rely on it to help control MS also, as I'm on no other meds. So I have concerns about MS flare. I guess I need to bite my tongue more often. Don't need a MO upset with me, or his staff.
Have a cooler day today and please be well. I am so sorry to hear about spookiesmom. It's another loss, another insult to the will to survive and the love and care we have for each other.
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Sondra, I am very sorry about the Cdiff. Have any treatments been suggested like a fecal transplant to assist? I just hope they can kick it too the curb quickly for you. In your pocket for this.
Threetree, I have had my oncologist call with good news over scan, that goes for MO and RO. Keep the appointment, keep yourself busy so you don't worry and stress yourself, put a song in your head that stays there so you can play it like a tape to help keep your mind busier or chores.
I woke up early but was in bed fairly early for me. No real reason. Just planning to handwash a few clothes, got the TV making some money for me and expecting a delivery of some bras, the ones I have no longer fit properly. Getting rid of some ground beef, not enjoying that as of late. Think I need to sub meat pies or the mini pot pies for meat. I think the egg, rice, pasta and beans are all I want or need and can make many combos out of those. Canned chicken or turkey would work as well. Also planning to run the robot vac early in case workers need to come in to work some more on the split AC, taking a few days and may not be done til into next week which is fine by me.
Hoping everyone has a good day, in pockets where needed for everyone as well.
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threetree I agree with the overall consensus of the rest but understand that it may seem concerning. It may be that he just wants to talk things out since there was mincing of words in the reports. sometimes it’s just too much to type and you need to speak to the person. I like the idea of keeping your head busy and don’t cancel your appointment for decluttering. Sending positive vibes your way.
sondra Hoping each day your feeling a little better.
Irish I can understand if you possibly sounded a little bit annoyed with the office. You are only human and you go through so much on a daily basis, so give yourself a little break on this. You know they deal with much worse than someone questioning where their meds are which is a valid question when you rely on it! Sometimes I feel like I sound a little bit bossy to the Oncologist when I state a lot of my opinions . But then, again, no one is going to advocate for me more than me!3 -
@irishlove You are your best advocate so keep on keeping on. Can you find any notes on your portal from your phone visit that states your dose reduction? I sometimes go back and read what they wrote just so my muddled mind is clear. I guess I am always looking for proof and reinforcement. And they sometimes drop the ball on med orders so don't hesitate to ask.
Sondra, CDiff can be serious and I know is uncomfortable. I will pray this clears up quickly from here.
My son leaves from their visit today—so sad. I have had a marvelous time loving all the noise and chaos of four grandchildren even though I wasn't able to accompany them on any of their outings. Even though I am in pain from Faslodex shots and feel like crap, it was a lovely visit. I can rest once their gone.
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Intolight, glad you had a nice visit with the grandchildren, always good when that happens.
With older DB being sick for longer and a bit older than me, I've decided to take DB and SIL off the hook for shopping trips. Spoke with SIL about it, told her that I m aight sk for a cat litter run from Costco and perhaps go out for coffee but that I feel like an obligation they made to my mother. Told SIL I do not want to be that and that my mom is gone so no one is holding them to that. Also said that I generally feel like sh1t the day after Herceptin so preferring to take the day off. SIL did not say I was not an obligation either. I want visits because we want to see each other, not for a chore. We will see how old DB feels about it, but I think it would be a relief honestly for them and for me.
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