My Husband, My Life, My Love, My Family, My Cancer
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BevJen- Wow. Sorry you felt bad, hope I didn't send it to you. LOL.
Mara- Sorry you are feeling poorly today. Sinuses? I have sinus issues-- post nasal drip.
Ok, so venting. I had a tele conference visit with MO last month-- phone call as I do not have video set up yet. My MO moved my monthly injections to coincide with this months office visit, making the injections 10 days late. I have appointment for this upcoming Monday for the office visit, injections, Port flush, and monthly labs all at the same time. So today I get a call from the receptionist. We are doing office visit by phone again (I still do not have video capabilities). I said, "how about the injections". So we are doing phone call at 10 am and injections and labs at 1pm (I will go to the office at 1pm). So I am 10 days late on my treatment for no reason--could have went when due. And this month I still don't get to see doc since I do not have video. The receptionist is very friendly so I asked her will this be how we do office visits from now on. She said if the patient is ok with it, probably. If a patient pushes for an in-office visit, she will schedule that. She said the doc is seeing the chemo patients still. And since I am not receiving IV chemo, my visit can be done virtually to keep doc "clean" for the patients she really needs to see. I get that and it makes sense, just frustrating. I would like to SEE my doc every once in a while. I wonder about progression---I think at that time I should have a real office visit. I hope my May scans don't get cancelled. I will ask her on Monday phone call.
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Candy, as far as I know, my sinus issues are related to Herceptin I get every three weeks. I know I can take claritin and it may or may not help with this.
I am sorry you are not able to get in with MO in person. Talking on the phone is not the same as being seen in person. Stage IV people may not all be urgent and some visits can be done remotely, it still is not the same and we should have at least half and half. Reassuring to us when needing to talk to doctor.
I keep wondering if my visit in May will be cancelled. Hope not. Last time I saw anyone was end of February. That will be a long time not seeing anyone. We will see.
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mara - did you take your temperature? I don't know what the testing criteria in ON are right now ( I think you guys are still short of tests?) but in BC, anyone with cold, flu or covid like symptoms now qualifies for a covid test.
Of course your advil & tylenol will mask the fever now but if it's about 4h after taking your meds, I'd say check your temp. And maybe call your Dr to talk it over anyway? Hope it's nothing...
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Thanks moth, I will keep that in mind. I will have to wait about an hour but will check my temperature since the last advil. I do feel better but will double check. My problem is that I do have sinus issues as part of SE with my Herceptin, there may also be allergy issues. I am starting to wash bedding a couple of times a week to minimize risk, vacuum more and dust more in case dust has been an issue.
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Ugh, my older brother had to get a covid test due to cold and flu type symptoms. He will have to work from home until results come back negative. Nephew has to stay home too until older brother is cleared. I know I should not be surprised but is still a bit unnerving at the same time. Hoping is just a cold or something. I may ask for a test due to my own symptoms. Going to call our telehealth and find out if they think I need one. Not going to panic but it hits close to home. Trouble with me is that some of my symptoms are similar to SE from Herceptin so cannot actually tell the difference.
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Mara~better safe than sorry. I hope your brother is ok. So hope you aren’t sick and it’s just the side effects or allergies. (Not that those are pleasant by any means)
Thinking of you all. Waving to a BevJen! BooBoo! Candy! karen! Dodgers,Moomala,Rosie,Simone,Philly, and Mae miss you both! Jensgotthis , iwrite,Runor, Marie,GP (even still), everyone keep staring healthy
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Thanks Mel, I did call telehealth and a nurse will call me tomorrow since I was prompted to when filled out online questions.
As of now, really don't feel ill at all. Eating supper and just lazing around.
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waving hello to Moth ! Hope you’re doing good today as well. Dreary day here for me. Tomorrow rain. Yuck. Can’t wait till bed already!
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My State, Illinois, extended stay at home order thru May 30. Whoopie. But necessary. Bitter medicine though.
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I'm bad and sad:( woke up with 38.4c fever, had my chemo cancelled.. I had a nap and when I woke up it was 39.1! I was worried they'd make me go for sepsis workup and covid testing but she relented and said because i live with family and dd is a nurse she'd let me stay home.
I had to do urine sample today and luckily I had a new orange top at home otherwise dh wd have had to go pick it up and come back and then go drop it off becasue I'm not allowed in the lab with a fever. Such a huge mess. I hope the Advil kicks in soon
She is pretty sure it's another UTI and I've started abx. Thx forgetting me unload. Oh and my bladder and urethra hurt becasue apparently I have crystals there
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Oh Moth, gentle hugs. I am sorry to hear about the fever and also the UTI and also the crystals. That is miserable. Hope they get it all sorted out for you soon.
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That sounds just miserable moth. I hope meds kick in FAST!
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Moth~ouchie. I’m so sorry you’re not feeling good. Any crystals can hurt. No matter where they are. I hope you have some good pain medicine. I sincerely hope you feel better like now. What we all go through is so hard. Hugs my sisters
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Love this post Mel. Very true statements that would make people feel good.
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Moth- Sorry for the UTI. I haven't had many of those, but I have had kidney stones. Hope you get to feeling better soon. Push the water.
BevJen- How are you feeling today?
mara- You feeling ok today?
Another exciting day at home today for me. LOL. Treadmill is in the plan for today as I did not walk on it Tues, Wed, or Thurs. My bad. Did Sun and Mon though. And if I can do today and tomorrow, then 4 out of 7 days. I think that is good. As I posted yesterday, our stay-at-home order is extended to May 31. I know it is the right thing to do, but it is tiring staying in all the time. Yesterday I made a trip to the bank (drive thru) and stopped by a friends house to pick up some fabric masks she made me. We just said HI/BYE at her door. But, Hey, I got out. LOL.
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Mara I do really try tolove unconditionally, I've made it my life's work to do that. I did it for real with my father. At the end of his life. Put everything from The past 14 years aside and took care of him when he needed someone. I was there. I don't walk the walk without talking about it along the way. I tried to teach my kids to be sensitive and kind I think of everyone lived by that, the world would be happier.
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Candy~Ouchie for sure kidney stones are awfully painful. I’ve had a few boughts with them equates to none other than child birth. I always wondered what it was. I was told calcium I love unsweetened iced tea. Not anymore. It’s what promoted the formation of them. I miss my ice teas for sure. Now I drink just water really. Keeps my skin clear and younger looking. I’m going to be 50 in May! Arehgghhhhhh!
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Mel, I try hard to love unconditionally without passing my own judgment of other people's choices. I don't like being judged by mine, and my family has gotten away from judgments for the most part because I learned when to keep my mouth shut about what I buy or other financial choices I make. If I don't agree, I don't bother arguing, I just do not follow advice if I don't think it will help. I just don't argue choices for myself now.
Candy, I still feel like I have something, still bit of sore throat and feel something in chest. No real coughing or shortness of breat, no chest pressure and no fever. The nurse suggested I go see IF I can get tested but it is across town, I have no vehicle so would have to be packed on the bus with others. Called my brother and he did not want me to go on the bus. If I was still feeling ill, he would drive. I agree and really don't go anywhere by bus. Sanitize before shopping at the grocery store so I know my hands and stuff are already disinfected as I scrub bags down either in wash or soap and water which is just as good. Not concerned about infecting others. I will cancel infusion if still feeling poorly next week as I don't want to share whatever I have. I actually do feel pretty good today though. I really think I am fighting a regular cold or flu and symptoms are just mild.
My DB already got his online covid test results, he tested negative. He is still supposed to remain isolated, not sure how long just given that he had to have a test. I am very relieved to hear that for him and his family.
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Hello Gals,
Moth-healing thoughts coming your way; UTI's are dreadful. Make sure they test the causative bacteria for antibiotic resistance. That way you will get an effective antibiotic.
Mara-glad this thing you've got isn't severe; willing it to just GO AWAY!
I spoke with my MO yesterday. My PET scan revealed mixed results. Lesions in bone, adrenal gland, spleen stable or diminished. Lesions in liver a little worse. Getting referred for Y90 in liver left lobe. Possible radio ablation to one lesion in right lobe. Love my IR, she's very capable. Will continue on Erubulin. Being referred to oral surgeon for ONJ. Fortunately, I am not in any pain with the small ridge of exposed jaw bone. It feels weird, though.
So, I feel happy with the plan. I think Y90 will give good results and peace of mind for quite some time. Not sure how the scheduling will go now that we're in Covid land...
Love to each, Mary Jane
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Candy,
Thanks for the check in. Feeling better today, although I am tired. No nausea, though. Am trying to motivate myself to go out for a walk because I know I'll feel better. Hope everyone else is doing okay today! Mara, sorry to hear that you are still feeling not great. Hope things change soon.
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MJHJAN, glad that the ONJ is not causing pain for you, I can imagine it feels weird for sure. Glad to also hear that you are feeling good about the Y90 and the drug you are still on.
I do feel better today, taking it easy. Listening to the new Stephen King If it Bleeds book that just came out. Have not actually listened through an audiobook before. It is a free trial of audible so I will see if I keep it or not if I like listening to this book.
As far as getting possibly tested, I am still going to postpone that unless there is worsening symptoms or fever. Will wear mask when out and of course sanitize hands. My knapsack I use to put grocery items in gets washed regularly. Other people will be safe even if I choose not to go see IF they would even test me. No guarantee it would happen.
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Thanks all for pocket duty. PET scan was efficient and everyone stayed their distance. I was thinking I could do it without the Valium but have myself anxiety thinking of what if’s so I just popped the pill.
candy I haven’t had the virtual doctor yet. I’m sure I won’t like it. If you don’t like it and don’t have the computer or phone set up tell them you’d prefer to come in. Delaying shots for 10 days probably will be alright but I’d like that explained to me too. Deep sigh.Mary Jane wow you got results already?!??! I have a dr appt. Tuesday and port flush shots and all of that so I just try to put it out of my mind so I don’t drown in anxiety.
Mae I hope you’re doing better.
Has anyone heard from Philly?
Moth sorry to hear you’re not feeling well.
Mara hopefully it’s just a slight touch of a regular cold.
Waving 👋🏾 to Bev Mel Moomala
Booboo Runor anyone else I forgot.
Tanya
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Tanya, I agree that it is probably a cold. Not feeling sick at all. I was sicker a few weeks back. My infusion drug Herceptin also mimics the stuffy sinuses of a cold too so it often feels like I always have a cold.
On the plus side, I finished the first story in my If it Bleeds audiobook. It was really good and I quite enjoyed listening to it. May try another story on the treadmill at some point but I quite enjoyed myself.
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Mara~Glad to hear it is only Your basic cold, but they can also be so bothersome. Sooo glad your DB was negative for covid. How important for your family! All your mention cheese and beans has made me want my dads black bean dish. This year he will be making it in heaven.
Tanya~ I texted Philly last week to check on her, she lives in the the city and they are in lockdown and she's feeling anxious over all of the this and she's used to being our social gatherer. It's bothering her and she just needs time to adjust and get out of her funk. She assured me she's coming back and it's nothing serious thank goodness.
Bevjen~ Glad your feeling better today as well. We will take any little bit we can get. It was raw and rainy today here, that never helps me feel good. Or my joints!
Sondra~ you ok in there darling ?
Dodgersgirl~ 🌹Runor~ 🌻💕
Minnie~ Hello lovely friend. Hope you're doing well in your isolation. Think of you often.
Candy~🌻🌹 Saturdays coming and my dh says what will we do tomorrow? I wanted to kick his shin for being snarky. Lol we can't go anywhere We both laughed Nope not today junior not Today.
MJH ~ I am relieved that your jaw isn't painful. My god we don't need to add that to anything. I know my tongue would be destined for the opening if I could reach it. I hope there is something they can do To stop the receding for you. I get XGeva and I know a few spots that could possibly make problems down the road. Right now I feel lucky.
It figures. I scan right before all of this and I can't even enjoy the results fully. Nead. Now go sit in your house for two months. No really I'm Serious. Go stay in and isolate Bam!
I don't know why. But INsomnia second time This week. Just open my eyes and I'm Awake?odd ! Hope everyone is soundly sleeping. Anyone remember yndorian? I miss her sweet sense of humor also. I hate when people go.0 -
MAE~Please just pop in and let us know you're ok. You know my mother hen ways. Just getting worried. Miss you around. Hugs sweet friend....
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Sondra, thanks for pointing me to Mel’s Philly update from the I/L thread!
Know the feeling Mel re clear scans and lockdown.
Yes it’d be great to hear from you Mae
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covid19 uestion for you all
Are you wiping down or spraying mail and packages before they’re brought indoors?
With all the charts that show the virus remains alive for many days on surfaces, I am very aware that touching mail or packages could make me sick.
I do wash my hands after handling mail and packages and I do spray with disinfectant outside
I have seen medical doctors on tv advising to spray these things outside and throw the boxes away without bringing them inside. I have also watched YouTube videos showing how to wipe off and clean all items from the grocery store.
But have also heard from people on tv who say you don’t have to disinfect the mail, etc.
and so I wonder what you all are doing
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Dodgers- I am doing some of this but not all. For instance, I received my Ibrance by FedEx. I opened the box and dumped out the medicine and papers and then immediately threw away the outside box and washed my hands. And some mail I am spraying with Lysol and some I am not. Items I am keeping i.e. bills I spray down. Junk mail I just throw away. And then wash hands. I am not wiping down groceries/cereal boxes/etc. I don't know if I am doing enough or not. I guess main thing is washing hands after touching mail or coming home from store. We cannot do 100%, 100% of the time.
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Hi all, checking in. New meds are helping a bit to reduce the vomiting, which is great because I was getting weak and dehydrated. I see a GI doc in two weeks and have a consultation next week about the vocal cord/throat issues, not sure what they’ll recommend, probably some kind of surgery, ugh. I spent several days in a dark hole but I’m mentally better now that DH set up the pool I bought.
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