My Husband, My Life, My Love, My Family, My Cancer
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The vet said that someone had to remain on premises at all times when he goes into surgery. Older dogs tend to run high blood pressure while sedated, due to anxiety and owner withdrawl. So I am to stay with him for the afternoon and he can’t eat that morning. 🙉🙉🙉🙉🙉🙉🙉🙉🙉🙉🙉🙉🙉🙉🙉🙉🙉🙉. I am in big trouble there. It’s going to drive me insane. He will howl all morning. They want the owner readily at hand to speak to the dog, so they hear a familiar voice and have a familiar smell at their head. I was thrilled to hear this because I didn’t want to leave him. He’s my baby. Tag will also be all weirded out with his lil bro gone again. He laid in front of the front door until his pal came home last night after the vet. They are Inseparable.... the vet said once this is done, he’s good to go. That he’s in amazing shape for age 11. That this is common for his breed. So I am relieved it’s not cancerous. That’s all I would have needed to loose my last marble. Love you ladies !!!!0
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Lmao. Best dog costume I’ve seen Ina while !!0 -
Mel sooooo glad to hear it’s not cancer for your preschools deeoghee!!
Popping in to say hello!
Things are good in Philly - gorgeous fall weather we are having, people are back into the swing of the year/school/etc...Halloween is approaching and for the first time in forever I have a planned costume! Will share once it is on! Planning to go dancing at a Halloween party. I treated myself to a VIP ticket to this party and have a couple friends joining. Looking forward to letting of some steam on the dance floor! I absolutely LOVE to dance!! And who knows, maybe I’ll meet a sexy ghoul or goblin 😉
Hello to everyone! Mae that photo comparison cracked me up!!!! You are so funny! I love to sense of humor :-)
Watching the World Series over here, I guess I’ll root for Washington! Since they are closer to Philly :-
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prescious not preschool deooghee! Lo
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Good evening all
Wow this thread moves fast.
Boo and moomala I thought you had tests or something Thursday morning? Pocket duty. I have a PET tomorrow at 3:00 and then I will joinCandy waiting for results. I’m holding your hand and doing headstands to distract you.
Mara and Mae thanks for the uncle fester laugh. I think we al “we’re” that costume.
Grannax and Sondra that’s the epitome of an awful office visit. Can Mae loan you a colorful curse card?
Mel the adder all sounds amazing do you still have to use mm to relax or do you just sleep?
Booboo I’m sorry about radiation SE’s. It sure knocks you inside out and then your fried skin falls off. So glad you’re feeling better today.
Moving soccer were you looking for the DD214? Nice find that would take forever to replace.
Santabarbarian nice to see you.
Ok turning the page now
Tanya
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Philly~Hello there darling. I'm sure you'll be a dancing queen like abba (fav song). Halloween is such fun. I just hope this awesome. Weather holds up for us. It's been so perfect. One rainy day. But other than that. Perfect fall temperatures for us! Yay!
Tanya~ I didn't nap today again. I do use the MM to relax me along with my Valium to relax my nerves. It makes me sleep so soundly because I'm actually tired when I go to sleep. I'm finding it a game changer for my fatigue. Even if I just rest a spell, I get right back up again moving moving. It been such a delightful smooth addition. Makes me feel alive again. I'm so thrilled. I recommend it fully. Honestly. It works wonders. Hugs to you lovely. Loved your humorous posting!!
Goodnight ladies !
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Mel have you heard from Gum doctor 🥼?
Tanya
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nope put her in the role call. I’m worrying for her as well Let’s hope she comes and gives us some relief from worrying.
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Good morning,
The dog costume is perfect! So good to see everyone’s news.
Still in the house remode here...waiting on the countertop people this morning... don’t you love racing around to get ready for when contractors are expected to show up...and then they don’t show up? I could have slept longer
. It will all be worth it!!Micmel- your note about Gumdoctor reminded me. Has anyone heard from Blaine Jennifer or Jensgotthis? I haven’t seen them lately.
We’re seeing lots of new folks on these threads. I hate that they are joining the club, but love meeting wonderful people from around the world.
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Hi All!
Tanya I had blood work today to see if my counts came up enough to start Afinitor tomorrow. I went early this morning and the results just hit my portal and looks like I'm good to go for starting tomorrow. Same with booboo1 - I think she was starting her new treatment today.
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Moomala, BooBoo, Thinking of you all starting your treatments. holding your hand and hoping for the best of no side effects. No no no.
iwrite~Hello there darling. Very good to see you. Love the end result of the remodel, but the during sucks, plain and simple. I have not seen either and that concerns me as well. My list of non sightings is growing daily. 😞🙉. It’s always so nice to see you.. hope you’re doing very well! Welcome back.... hugs my friendHello to Tanya. And Grannax, Mara, Candy,Sondra, giddyup. Mae, and all of other sisters. Love to all
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Hi.....I just got back from my appt. Because of the severe stomach pain, they have decided to delay the start of PIQRAY. Probably a good idea. My onc was not there, but I got into a verbal battle with her PA. She insisted that I had to have a CT today. I told her I cannot drink the barium. (She is worried something else is going on, like diverticulitis.) She went ahead and scheduled it even though I told her I can’t do it today. Maybe it was CYA, but I told her I am sure this pain is from the radiation. I asked her to look up the side effects, but she ignored me. When I was checking out, one of the schedulers comes over with the CT script, and says they will be waiting for me to arrive. I almost lost it. I said last time I checked, this is MY body, and I was not going to the appt. They all looked around like “what should we do”. Then a really nice lady said you are correct. It is totally up to you. So I left and came home, and rescheduled the CT for next Monday.
I don't know about anyone else, but I am not going to let these office people tell me what I must do. We have rights, and I plan to exercise them!
Sorry for the rant, but had to get that off my chest!
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Boo- I am sorry you are having such a time of it. I can relate when you said "I asked her to look up the side effects, but she ignored me". Seems like when we say something that shows we research our situation (side effects, possible treatments, etc) the medical staff doesn't take us seriously. I usually get the eye roll. I guess they think we are trying to be the doctor. But, Yes it is our bodies. I have had words with my PCP in the past, way before the cancer. He would advise on such and such and I would politely decline. But, yet again, my body not his. Lord knows what he puts in my chart. That would be a fun read. I am probably labeled a non-compliant patient.
As far as our rights go, I found out my CT results today. Still no call from MO. I had CT Monday, this is Thursday. I do have appt with MO scheduled for next Monday. But I was getting very anxious and still nothing in patient portal, so I went to Medical Records and signed a medical release and got a copy of the typed report. My right to a copy of my records. Now I can research and have a list of questions ready for MO for Monday. There are some changes to liver met, but I don't know the significance of the changes yet. Time to do some thinking and reading.
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Candy and Booboo, yes it is our body. Yes,we do have a right to our records. I hate it too when SE are minimized. I challenge the dismissive people to put up with what we do.
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Booboo- They have clear contrast that you can drink before a CT scan instead of barium. I ask for it because I cannot get the barium down.
They can flavor it or leave it plain. I can easily drink it without “suffering.”
I think there should be a law against barium beverages. How can something that looks like a milkshake be soooo nasty!!
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That’s the other thing we had words over. I told her I cannot do the CT scan at their location because of how small the donut opening is. She tried to do everything to get me to schedule there. I finally told her I have a choice where I want to go, and I’m going to Baycare. Their equipment is really new. A PET only takes 18 minutes. Plus the donut is huge. Anyway, Baycare has the liquid you described....no more barium. So whether she likes it or not, I am going to Baycare for all of my scans. Seriously, like we don’t have enough to deal with! Urgh!!!
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Mara,
Exactly. Would like to see them get stuck with endless needles, be put in machine after machine, whether for radiation, PET, etc. I'll bet they wouldn't make it very long before we'd get an apology
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I had raspberry last time and it wasn't bad It's the thickness that gets me... I gag and feel sick in my stomach. Maybe that's how she felt also. I am not a good patient, not by any means...
I took a nap today, first one in three days. This Adderall has changed my functionality and what I can now do during the day. I went to see my niece today, it's looking like lupus. She has sores the size of silver half dollars all over her skin. She let it go to long and it damaged her kidneys. Soooo she is waiting for confirmation. Shortly coming. Unless she has doctors like us and we have to wait a month for results, Life is so challenging!
My poor sweet friend is dealing with this unwanted pregnancy and I feel bad saying that. Her tears are so raw, like ours. She's disappointed that she took the pill and got pregnant anyway This is a responsible young woman...... she isn't taking any of this lightly. It's heartbreaking. Honestly. I wouldn't want to be that age again. What age would I want to go back too? 33ish? Yeah that’s it.
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I also cannot stand things that don’t have the bigger opening. I can’t hack it I freak out. I’m clostrophobic I cannot spell it But I am it!!!
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Morning all -
Getting pretty dark here in the mornings (literally, not figuratively!) and while the time change this weekend means itll get lighter again in the mornings for a little while, I guess we trade that off for dark earlier in the evenings
Yesterday it was a dark, heavy cloudy and rainy day which just... sucked. So far sunrise looks like we may see some sun which is good - I need to go sit in some of it for a bit!I took two days off the medical treadmill, so today I need to make insurance calls and take care of some other stuff to get it out of my mind. Pretty tired after hauling into work two days in a row (not to mention Girl Cat woke me out of a dead sleep this morning with her insistence on being fed on time), so wfh (not like anything is actually going on anyway) for now. A couple of days puttering around at home taking care of minor tasks and doing some more cleaning and purging sounds like a really good idea!
Having a bit of a cough this morning but also some post nasal drip/sinusy which is par for the course this time of year. Not panicking yet as I've felt like this in the past. Probably time to do a nasal flush.
Boo - I try to have patience with these folks cause they are just trying to do their jobs, but there is a point where you just want to shake them to get it through their thick skull that no, you are NOT just going to go along 'because' and you DO have a choice in the matter. Good for you for standing up and pushing back!
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Thanks Sondra. I totally agree that these folks are just trying to do their job. Most of the staff are wonderful. I joke with them and try to always thank them a lot for what they do. This particular PA is, I think, trying to do the onc’s job without the license. I am going to talk to her next time and be kind. I will try and explain how we feel being TOLD to do something. We need to be asked, “Does that sound okay to you?” This girl is very young, so she may not have the training yet in how to treat MBC patients.
Mel, I used to put up with the small donut machines, and my heart would race so fast, I thought I was having a heartattack. Then I found Baycare, and I will never again go back to those other machines. Their PET and CT scanners have wide openings, so that’s why I will need to make it clear that I will only go there for scans. Again, just advocating for myself
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Morning to Sondra, Boo, and everyone else logging on this Friday Morning.
Not much going on here today. Clowdy and cool today. Good reading weather.
I posted on the Liver Met thread and got some good advise on the slight increase in my liver met on the CT. Now I have some questions ready for my MO appt on Monday. I hope my MO is receptive to my questions. And I have to remember to number them in priority so if she is rushed I can get the most important ones addressed if not all of them. I am thinking not enough of a change yet to warrant a change in treatment. So we shall see. Pretty calm about it. Yeah looking for information/advise, but calm.
Hoping we all have a good day. Time change this weekend?! Was thinking that was in November. Good grief.
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Good morning Candy, it is the same weather here in Southwestern Ontario. My local forecast was talking about possible snow on Halloween, perish the thought.
Booboo, I am glad you put your foot down advocating your own treatment. We sometimes feel we have to do what we are told, but if we are firm about some things, we can get them done.
My infusion of Herceptin went well yesterday, nice to get out in half the time. Now to see if bathroom issues stay resolved. So far so good. Have not had immodium for a few days and no accidents. That is progress. Glad my MO is on board for just Herceptin and can get exemption to drop the Perjeta. It is often called Poojeta on other threads on this site due to it's nasty side effect.
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Mel, I am sorry for your niece. Lupus is such a difficult thing to deal with. My thoughts are going out to her right now. And your friend who was being responsible about birth control hit with a pregnancy. None of the different options she could take would be easy. They all have different ramifications. Good luck to her on whatever she decides to do about it.
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Candy I'm really sorry that you have had to consider all that but it seems as though you are quite prepared for your oncology visit Monday. There are so many factors and one thing we all always have to keep in mind is that our cancer is ours alone - no-one has quite the same situation. My particular experience was that I had a clean CT scan of bone, but increase uptake on nuclear bone scan in five areas. That with tumor markers that rose 10 percent in one month got me the treatment change. I was, and still am surprised that I was taken off ibrance when I had a perfectly clean CT, but the radiologist decided that the nuclear bone scan was giving us enough information to call it progression. Even the two doctors, one my MO and the other her fellow, in the room disagreed about it. But in the end my MO's opinion won out and I was given the choice of trying another AI or going to Xeloda. My MO told me that i DID have a response to Ibrance but it was too partial to get the kind of response she is looking for at the point. She said the good news about that is that once things get under control for awhile, it's possible Ibrance may be a treatment option down the road again, AND the if it were her, she'd try to second AI and push Xeloda down the road. I think I mentioned upthread too that she also said Piqray may be down the road too. I am hopeful.
Meanwhile I have begun my treatment of Aromasin and Afinitor. ,BTW My MO told me that they are trained to use the actual name of the drug, not the popular name so that they aren't promoting into pharmaceutical company marketing. Interesting. For me it's just easier to spell! HaHa! Anyway my new treatment consists of two pills a day with no break and a steroid rinse for my mouth four times a day. My pharmacist said three times a day is fine but I am going with the SWISH trial recommendation of four times a day. I work at home so it's easy for me to do. Aromasin has been an easy transition from letrozole . Same SE's of aches. Today was the first day of Afinitor so I'm nervous about SE's of course. Hopefully they'll be minimal. It's a few thousand dollars more than ibrance I notice. Crazy.
It's a bit dreary this morning. I'm getting some work done in my piano studio to plan for upcoming recitals and events. I am sooooo glad I made the decision some years back to stop performing. I don't get as much piano time as I used to but performance, even at church services, would just be too much pressure on me this year. I am asked constantly and it's so hard to say no to people but one of the things I've learned about me is that with this disease I prefer a really flexible life and the ability to just hang out reading or playing piano for myself without too much commitment.
It just occurred to me to tell you, since I know some of you may supplement your nutrition with vitamins and things. When I was first diagnosed in the spring, my Vitamin D levels were sky high into toxic levels and I was told to STOP taking them. I had been using Standard Process liquid D3 and only using half the daily directed dose so uhhhh yikes. So I did stop and the next blood test was low normal range and I was told to start taking D3 supplements again. Off to my favorite health food shop for Vitamin and Calium supplements and they recommend Vitamin Code Raw Calcium supplements which include Vitamin D. They told me that certain elements of this supplement like Vitamin K2 help the main elements actual get to target. So I was interested to see how this would work on my Vitamin D levels. I live in the northeast and most people here are deficient. I was pleasantly surprised yesterday after six months that my Vit D levels are at a lovely safe high normal level now. Just in case anyone is looking for a good calcium/Vit D supplement don't be nervous to try this one. It's a little more expensive but seems to do what it says it does.
My cholesterol on the other hand was borderline high. Hopefully the Afinitor won't raise it up too much more.
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hi booboo - your story reminded me of how when I was first diagnosed, there was a very young (and I’m still relatively young!) fellow who was INCREDIBLY annoying who would come in to examine me and talk with me before my MO would come in.
She was very aggressive in her wording and would tell me that i should make appointments with a therapist and how a therapist would be good for my anxiety. She was really rubbing me the wrong way. I felt like, “bitch you don’t know me!! Stop telling me what is going to make me feel better!” Plus, I was already seeing a therapist, and it felt like it was none of her business. It’s hard to explain exactly, but let’s just say her approach was terrible!!
I finally asked if she would mind some constructive feedback, and I told her how her language and aggressive approach made me feel and that it wasn’t a good match for me. She apologized, thanked me for the feedback, left the room and I NEVER saw her again!!
I guess I scared that one away!!! 😂
But really, I think that at the teaching hospital where I go, what really happened was she told my MO (hopefully) and he told her she wasn’t to see me any more. I believe that perhaps they were trying to keep my stress levels down as much as possible, and if she was causing me stress, then she was out of there!
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Sorry candy, forgot that in the fall the UK goes back an hour early the week before the US. You still have that hour!
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Thanks Sondra for clarifying. Otherwise would have changed my clocks tomorrow night. Hahahaha.
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I was thinking that I was losing my Mind!! About daylight savings time. I even googled it. Sometimes I forget we all come from all over , Which is pretty awesome..
hope everyone is doing good today. Slight headache here maybe I should eat? Who ever really feels like eating with these treatments.? But then I get gastro issues if I don't eat correctly. Sigh. I just want to take a nap! Eating sometimes imo becomes really inconvenient when you just don't have an appetite. Then wham, you feel like crap.. it's one thing or another.
Much love to all sisters!! ~M~
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Mel, I hope today improves at some point for you. You are definitely right about knowing you need to eat but the difficulty is in no appetite. It is difficult for sure. I usually stuck with Carnation instant breakfast when I had food issues. Tasted more like regular chocolate milkshake and not gritty like Ensure or Glucerna could be. Helped to get the calories needed and start of feeling a bit better.
I just had my first video chat with my volunteer on Facebook. Very nice lady, very talkative and I enjoyed the conversation. Not much different than if she was sitting in my living room. Looking forward to other conversations in the future. I guess it really does make a difference to chat with people. Made me happy. It was the same at the cancer center yesterday while waiting. I was talking to the gentleman next to me and we had a grand old time, talked a lot of US and Canadian politics. It was great, really enjoyed myself yesterday.
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