My Husband, My Life, My Love, My Family, My Cancer
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Sunshine Great to hear hope it continues, fingers crossed. Agree, motility study is worth it!
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Good Morning Ladies! I hope you all slept restfully last night. I sure did. I was reading through all of your comments last night before going to bed but was just too tired to respond to each one of you. But I know there are so many struggles on this forum and I want you all to know my heart and soul are totally connected to you all, though we have never met……
@emac877 @sunshine99 @micmel @cookie54 @weninwi @rk2020 @AJ @intolight @irishlove @dodgersgirl@tanya_djamila
@sf-cakes @sadiesservant @mara51506 @goldensrbest and all I may have missed, in your pocket you guys💗💗💗
Love the Puppy Pictures😊
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Adorable dog and saying. I like to think cats experience that as well as mine spend all their time sitting on me. Hard when both want my lap at the same time.
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We’ve had dogs throughout our marriage of 51 years. We started with Great Danes, breeding & showing yellow & black Labs, English Bull Dogs, and Pugs. We’ve loved them all. I could never be without a Dog in my life. My daughters when they were kids loved the litter of Puppies we raised from Skipper & Kayla our beautiful parent Labs
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Intolight, thank you. It’s good to be feeling better. I have more appointments to schedule and will work on that today.
Irish, I’m so sorry about the whopper of the MS attack. I’m thinking you’ll be OK with missing a few days of the Ibrance. I took a few breaks when my ANC dropped too low. I’ve had several issues with UPS. One time the package was “out for delivery” and then it wasn’t, and it wasn’t going to come for several days. I called UPS and told them this was a chemo drug and that I needed it ASAP. My latest issue with them is that rather than leave the package on the porch doormat, they leave the package on the concrete in from the porch, in the sun, in full view of porch pirates, and the don’t attempt to get the required signature. Good luck with your delivery.
Cookie, have you had a motility study? Dare I ask what it was like? I guess if they numb me up enough, I won’t feel it.
Shana, love the picture. I can see the love in his eyes. I love all the other photos. We’ve had three Airedale Terriers – each one so different from the last one.
I’m hoping to have some chicken-tortilla soup for lunch today. Was so looking forward to it on Sunday, but that was not to be thanks to the swallowing/vomiting issues. I’m drinking water right now and it seems to be going down ok. I’m taking a two-week break from the Ibrance and then will see my MO to discuss my meds.
Waving hi to everyone.
Carol
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Irish - it’s good to be home for sure! Hope your MS flare subsides.
Mara - sounds like you have a good plan in place.Shana - love your photos. One of my bucket list items years ago was to have one litter of goldens. Our girl that just turned 13 was supposed to be a momma. I obtained all the testing and clearances and worked with 2 different exceptional breeders for stud service, but alas, it was not to be. In fact the second time around she developed a false pregnancy and the vet suggested it was best that she just get spayed. I had a waiting list for puppies and I was so sad to share the news.
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It is a pretty good plan I think. Look after myself better though. Legs got tired and came home in UBER. They need more conditioning. My new nurse is a nice guy, see once a week at home and then he calls on Fridays. Just waiting for MRI and OT as well, long wait for that but that is OK.
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Sunshine I have not had a manometry study. Yes from what I have heard they can use a numbing gel and spray and you should not feel it. I just feel like you have a good chance of getting this esophageal mystery solved. Are you on anti spasmatic meds?
Shana Oh how sweet are those dog pics, love them! You and your family seemed to have provided a great life for your pups over the years. I'm sure you really enjoyed it. Hope your feeling well this week.
Mara Sounds like your cats are sweethearts too. Animals provide so much comfort and companionship, amazing. Hope you are having a good week and feeling ok. Glad you will have OT and the nurse around too. Hope you hear something regarding an MRI appointment.
Irish So glad your home, now you can truly get some rest.
Today was another nice day, hot but less humid. Was a good day, caught up with a friend by phone and walked with a neighbor I haven't seen in a while. I don't know where the time goes some days. Off to treatment in the morning. had my radiation simulation yesterday so will start treatments in 2 weeks.
Waving hi to everyone , love and hugs.
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@mara51506 I love cats too.😊💕I had them all my life growing up, with mama cats and their kittens. When my children were babies they loved the kitty cats.👇
Here is a picture of my beloved TC (TopCat) 🖤🤍🐾 He lived to be 22. This is a picture of him at that time. He was around 19 or 20 in this picture. Although I always had and loved my cats I’m more of a dog person. I haven’t had a cat since TC, whom I lost, when I was in y middle 40’s.
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Good evening lovely ladies and any gents that may be stopping in. Hope it's a cool, comfortable night for you. That flooding in the NE is devastating and prayers for those folks. In pocket for all those in need. Hope testing goes good and results from treatments show improvement, stability and hope for a better tomorrow.
Loved, loved the pics @shanagirl What a great love for critters you have. One of my reasons for living. When I was diagnosed with MS and lost my career, I turned to rescuing full time. Always rescued but we stepped it up. Fortunately a good partner in our wonderful vet in Boone, helped to alleviate a lot of financial burdens. Not sure about the visitor to the bird feeder tonight. A rat! But you know I can't dislike one of God's creatures, except misquitoes and spiders (in the house anyway). lol
@sunshine99 Thanks for the response and I worry about porch pirates and of course meds left in the heat of the day.
@cookie54 You are a few steps ahead of me on radiation. Would you mind sharing more so I can get a grasp on mapping and what to expect. I read some of the posts on radiation threads, but it's helpful to hear it first hand when it's a fresh start.
Got a call from a Humana 30 day case supervisor assigned to me. Had her before and she's on it making appts. with Neuro consult, Pulmonary consult and got my GP appt. confirmed. They are sending 14 days of food! Helps so much as our daughter left today for a very much needed vacation. Wondering if anyone can comment on major kidney pain. All was clear in testing, but ouch. Pushing water, zero sugar, wonder what pain med would be best and safest?
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@shanagirl Those kids and cats are adorable. Thank you for sharing.
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Ordered a bunch of groceries from Walmart as I am not shopping with DB, he has been busy the last couple of weeks so whatever. Internet is still spotty. I think it is related to the number of tenants here. I get by using wifi hotspot for now when the modem craps out.
Exercise throughout day after breakfast after the groceries arrive. Inside and outside walk with PT. Eggs will likely feature in meals, perhaps pancake mix mixed with eggs and some beans, make the egg bread, savoury and use different seasoning in it.
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Question for the group:
I am getting email notifications whenever anyone posts to one of my bookmarked threads. This just started TODAY. In the previous version for these forums I always selected no email notifications. Anyone know why this change happened today and how to disable this “feature” ???
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Dodgersgirl, same here, I had to change all my notification settings (by clicking on my avatar/photo. I really don't want an email every time someone posts in all of my bookmarked threads! That would be a LOT of emails.
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I’m suddenly getting email notifications too.
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I have been getting those too. WTF? It just started yesterday
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Add me to the 'just started getting annoying emails' list. I deliberately turned my notifications off a while back, after getting dozens of emails in one day. It must be a glitch in the new, still glitchy site.
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Hmmm, I feel left out. I haven't gotten them but I don't know why. I have had to change my notification settings on here once or twice.
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I like the bookmarks but I sorta feel like it puts me in a bit of an isolated position. I used to scroll through all the sections and threads, because sometimes there was someone going through the de novo diagnostic process and it was kind to offer them reassurance. New site makes it more difficult to engage more broadly. Maybe thats better for mental health or not, but its something I noticed I was missing.
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@sf-cakes — I clicked on my avitar photo but didn’t see a place to turn off email notifications. Can you direct me further, please?
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@sf-cakes and all— I am NOT seeing emails this morning when people posted to my bookmarked sites so maybe a glitch was fixed? Sure hope so. I want the option to enable or disable.
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Morning ladies, yep me too . Yesterday also and none today must be fixed.
Dodgersgirl click on notification bell then upper right there are 3 horizontal lines, click on that and gives you all your notifications to adjust. Hope that helps.
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I am not nor have not got emails so I must be set not to receive one when some posts.
Not too much here, nothing new about that. Cloudy and rainy so staying in for now. I put a second Walmart grocery order through since I got extra gov't money this month. I was unable to get english muffins yesterday, hopefully get them today. Laundry, chores, surveys and games round out the day. Unsure DB wants to go out, 2 weeks not seeing. Not terribly upset, just unusual for them, partly why ordered groceries. Also will be doing some PT. I will say I think that is offering some benefit as I find when I wobble, I can recover better and quicker than I used to which is good, have my nurse call tomorrow as well, call on Fridays and visit on Mondays while I wait for the OT and MRI which regular one should be coming soon anyway.
Breakfast is stumping me, but thinking of a bean pizza on english muffin. Put chopped black beans and wheat bran. Perhaps a chopped up hot dog as well. Spread the garlic spread on the english muffin, put on an egg that was already cooked, we will see. Later today, there will be a proper pasta dish with cheese and the been mix in there as well.
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Good Morning Ladies.
I’m no longer getting those BCO notifications. I think i fixed it on my end by clicking on the file box and leaving the Bell empty. Then when I did that it popped up a message “you fixed it’.
I hope you all had a better night than I did last night😔I spent hours coughing and clearing my throat. Tried taking my inhaler, Robitussin, my nasal spray, finally I took the green cough medicine my GP prescribed last February when I had a very bad flu. That did the trick.
Today I woke up feeling so horrible. I am so tired and literally feel exhausted. My whole body is hurting. I am hurting all over my skeleton.I said to DH when he brought my coffee up, that my whole body feels Like stage IV bone pain all over. He said I must have a little summer virus because all day yesterday I was so tired and headaches.
I’m waiting to get in next week on the 19th for an MRI of my neck so my Pain management Neuro Doctor can treat my cervical stenosis with an injection, but he wants to do an MRI of my neck. He’s only got one from 2020 and wants an updated picture to see if anything has changed., then he’ll schedule me at the surgical center for my injection. He usually does this every 6 months or so which keeps me from painful flareups. It always works for me, and if I happen to flare up, too soon he gives me a 5d day pack of prednisone that tapers off, and this always gets me thru. So I don’t know if this is causing all the pain and headaches and pain in my arms and hands or if it’s Side effects of my cancer meds, or a virus. So I will give into it today and hang out with my Pug babies, the TV and of course my IPad..
Have a pain free day everyone. Those of you who are struggling, I will say little breath prayers for you🙏💗
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Good morning, ladies! Sondra, I feel the same way about scrolling through the forums to see if there was anything that I might offer a newby some advice from a old-timer.
Despite my coughing, I feel like I slept a decent amount last night. I have a message into my pulmonologist and am waiting insurance authorization for the motility test. I keep losing weight because it's so hard to eat anything solid. I think Ensure is going to get old.
I hope everyone has a decent day. Weird weather everywhere. There's a cool breeze blowing in my bedroom window (northwest corner of the house) but getting quite warm on the backside (southeast).
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Shanagirl, in your pocket on your path in treatment.
Sunshine, in your pocket as well. Can you chop up solid stuff into tiny pieces just to get other nutrients or does solid food just plain gross you out? Just a thought.
Well, shocked but happy enough. DB texted and invited me over to my nieces place so I will go, I have not seen her new apartment she is buying.
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Hi all, apologies for the email notification issue — this was an unintended result of us adjusting some settings in the backend. In the future, PLEASE don't hesitate to send us a PM or mention us in a post to alert us of the issue so that we can address it ASAP. Thanks and sorry again for the frustration!
—The Mods
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SondraF - I agree. I used to peruse the active topics a lot and found that it used to be easier. I feel like the way it's set up now I have to go searching for a particular topic. I miss that too.
Sunshine99 - I'm glad you got rest and I hope that you are able to get in and get some help with this.
Shanagirl - also in your pocket for feeling better and I am hoping your pain subsides.
Today is a better day. I think I've gotten through the hard phone calls and notifications and had my good cry. I slept well last night and woke up this morning to go to an education appointment for Piqray. I was halfway through my morning routine before I realized that I had not thought about my breathing. Even now I went out to put some water on the garden before the heat gets bad and I wasn't really feeling short of breath. That's a huge step forward from yesterday. In my mind I think I'm still hoping that the diagnosis is wrong but I think it's more practical to think that maybe there is a better timeline and more options than I'm aware of right now.
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mara, thank you. No, chopping up stuff like you do does not sound gross to me. :) I'm always intrigued by your food combos.
I'm eating mashed potatoes, drinking Ensure and (don't judge) I bought a can of Spaghetti-Os today. They looked good. We weren't allowed to have them as I was growing up, but I could have them if I went to a friend's house. Who knows? They may be totally gross, but I really wanted to try them.
Small bites, slow pace and smooth texture seem to be helping right now.
I wonder if ice cream would contribute to the mucus/phlegm. I think I have some mini ice cream cones from Trader Joe's in our freezer. I'll try one and see.
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Chemo treatment yesterday with steroids in pre-meds so find myself wide awake in the middle of the night.
Catching up with a few shows on my DVR then will try to go back to sleep. Maybe will dream of sleeping tomorrow
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