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My Husband, My Life, My Love, My Family, My Cancer

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  • mara51506
    mara51506 Member Posts: 6,246
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    I am still irritated by the whole perky statement Candy got. People really do put their feet in their mouths. I have recently started thinking 5 seconds about what I am going to say. I used to blab about anything just to fill the silence until I realized people were not listening. I was not talking about interests they have. Whole point is that person at church should have thought a few seconds, especially if they know about Candy's cancer and just asked how she is doing.

    I had a plain breakfast which I am splitting with supper. 1/4 cup white rice precooked, let it cool first. In the chopper I put 2 extra large eggs, 1/4 beans, a lot of bran and sprinkle of cheese. Added butter instead of cooking spray, heated through. Used some dry stuffing mix in the chopped stuff as well, salted it and used ketchup and mustard as with the butter, did not want mayo or anything. Perhaps will have an english muffin toasted and butter and scoop this over the top, who knows.

  • emac877
    emac877 Member Posts: 688
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    If I can't mention everyone know I have read through your posts and am thinking of all of you. I have not even gotten to go through other threads. LOL. I'm doing okay. I've been really sick for about a week and I think it stems from dehydration. I got fluids and dexamethasone yesterday at the cancer center and I feel better. I'm working on keeping up with fluids today and was told to add electrolytes to them. I am trying not to be too bummed about my MRI results. It's mixed news. The ones I have in the frontal, caudate, and occipital lobes shrunk. That's great. Some of the ones in the cerebellum are shrunk too, however, there are two new ones and I see the RO tomorrow to see what to do about that. For one, I didn't think I had that many. Two, it can't be good that new ones are there after being on Taxol AND piqray. I think I'm probably due for a med change. We'll see. I have a bone scan on the 7th and a CT of the chest/abdomen on the 20th so it's my month for scans. I typically don't get a lot of anxiety about this but this summer has been a doozy and so I am a little nervous about what lurks beneath if you know what I mean. LOL.

    I would love snow! I also hate being cold. I have my fake electric fire going which I think is more for ambiance than heat. We are getting a small part of that atmospheric river this week. I think it hits the coast and weakens by the time it gets to us so no snow expected in the valleys but probably in the mountains. Crater Lake and some of the Cascade passes have some. Just rain expected. I have been impulsively wanting to bake a pumpkin roll. I'll have to see if I have the ingredients and the energy today. Trying to make use of the steriods and coffee. ☕️🌨️🎃

  • candy-678
    candy-678 Member Posts: 4,141
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    I think the church lady didn't really mean anything bad by what she said. I think what she was getting at was that when I do finally attend a church service in-person I sit in the back, alone, masked, and do not laugh and joke with the fellow church members. I do not attend dinners or special functions that our church has planned. I am not "perky" like I used to be— coming early, visiting with people, helping plan activities, etc. She thinks I dwell on my situation too much and need to get out of my head some and participate. And there is some truth to that. I do not like how I have become. But I physically, and mentally, do not feel well most of the time.

    Today is one of those days where I feel foggy-headed. I do that some days. Like I am walking around in a fog. I certainly don't feel "perky" today. Do any of you all feel that way sometimes? Forgetful. Tired. Blah.

    Emac—- Pocket duty for your month of scans. My thoughts are with you.

  • irishlove
    irishlove Member Posts: 527
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    @emac877 Thinking of you and hoping the scans are better this month. You certainly have had a difficult time. Maybe those mets are super small and will vanish quickly. That's my prayer for you.

    @micmel I'm on 100 mg. P.M. being sent. Hope you are holding your own . My heart truly aches for you. Theo needs to give his Mommy more kisses and cuddling.

    Hi everyone. I think the Cymbalta is a mistake. I noticed less burning pain but second night on it and both nights I suffered from horrible insomnia. Back to Zoloft as that doesn't have any side effects now (it did originally but they've subsided). Does anyone ever use a Pick line instead of standard IV? I have 4 major bruises from Monday's attempts to find a vein. Happens a great deal of the time. I don't want a port as I had one years ago when using chemo for MS.

    In pockets for all your needs and hopefully good scans.

    Laurel

  • intolight
    intolight Member Posts: 2,240
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    Candy, the way you feel is similar to me. I definitely am no longer perky although I am not sure I ever was, and the arthritis is rearing its ugly head. I expect when I see the neurologist Tuesday he will reinforce that notion. I no longer attend in-person church, not since we moved to a different state. And with my oxygen mini-machine I think the noise might be annoying to others around me, and of course I would have no interaction. I would struggle just being a stranger who walks in and out of the service. I attended with my DD when we first moved here, but it was too difficult and I wasn't even on oxygen at that time.

    emac, it would have been wonderful if all the brain mets behaved better, but mixed results and slow grow is better than fast. I will definitely be thinking of you and all your scans later this month.

    seeq, slow growing mets bring up emotions others don't understand.

    It is warmer today and the temperature should hit the low 60s the next five days. That is a win for me here!

  • shanagirl
    shanagirl Member Posts: 380
    edited November 2023
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    @candy-678 I do feel that way too candy. I’ve been like that for the last two weeks. I think I’m boring. It’s the constant fatigue and med SE’s. Sometimes I feel like I’m in such a fog and forgetful. I love that I’m stable and the numbers in my CA.27 Cancer Antigen test are now down to normal again, and all this shows my meds are working…but at What cost? So I do get it candy. Don’t blame yourself if you’re not the Perky person you used to be, it’s not your fault. I think church lady didn’t think before she made that statement and I don’t think she was being intentionally mean with that comment. Just ignorant to what we go thru. I’m in your pocket for those days you are not feeling well an not perky. We are here for each other candy.🩵

  • candy-678
    candy-678 Member Posts: 4,141
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    Thanks to all of you. You truly get it.

    Intolight- We do sound very similar. The way you said "I would struggle just being a stranger who walks in and out of the service". Exactly. I come in and sit down. Then get up at the end and leave. That was not the old me. Not at all.

  • micmel
    micmel Member Posts: 9,969
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    I’ve never had a pic line. I have a port. Wish I could help! But I have heard from others it’s better than getting stuck five times. Hugs!

  • cookie54
    cookie54 Member Posts: 741
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    Irish Sorry you have such an awful time with your veins a PICC line may be the way to go. I have a port but if you do get a PICC line if its a power picc it can be used for CT also .Definitely something to inquire about. Hope you get better sleep tonight.

    Emac I've been thinking of you. Sorry to hear about mixed results on your MR and have been dealing with dehydration. I hope your appointment goes well and you get encouraging news on moving forward with a plan. Hope you made the pumpkin roll and enjoyed a nice big slice of it! I love it and will also be baking it soon.

    Good night ladies, rest well…

  • shanagirl
    shanagirl Member Posts: 380
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    @irishlove I too have nightmare veins. They collapse and explode when the Lab techs try to get a blood sample or insert IV’s.One time it to 6 techs to try and get a vein. I was silently in such a panic that I told my DH I was going to take control of who does this. Yes, there are very experienced techs that can do it without problems the first stick. I now go to the same one every 4 weeks and she uses a fine needle, it’s #29 I think and she is able to do the procedure the first stick and I never have I gotten a bruise when she does it. I always ask for her now, and if she’s not around I tell them I will only allow an experienced tech stick me. No more young new out of school techs I allow near me. It works. They are very accommodating at the Cancer center where I go. We have to be assertive.,when I see a young one come in I say to her can you please find an experienced tech because my veins are really bad and explode. They usually totally get it because I know they don’t want “hard stick” with any patient.😉🩸

  • sunshine99
    sunshine99 Member Posts: 2,687
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    Wow, I’m playing catchup here, so pardon me if I miss anything. I see there are 51 new comments.

    My phone is going wonky on me. It’s 100% charged, then shuts off, restarts and says it’s 10% charged. I made an appointment with Geek Squad, but I thought the issue was resolved. It started up again. I don’t know whether to go to Geek Squad, the Apple Store or the Verizon store. Maybe I’ll make another appointment with Geek Squad.

    Oh and my Nespresso machine quit, so I ordered another one. I got this one in 2020 when everything shut down due to COVID. New one should come today.

    DH turns 65 today. We’re making apple pies tonight.

    Mara, I hope your back is feeling better. Your “wellness” checker told you to shut up??? I’m flabbergasted! And pissed!

    Mae, I’m glad you seem to be getting over the virus. I hope you keep feeling better.

    It’s cooler here in San Diego. I’ve used the space heater in our bathroom a few times. We have no heat in our 1910 Craftsman home. We don’t get the extreme temps here, although we do whine about anything below 40 or above 80.

    Keris, I’m sorry about your pain and I’m sorry you’re feeling dismissed by your docs. And you’re not whining here. This is the living room where we can talk freely.

    I have a friend coming over this morning. She’s the one I refer to as “my yarn enabling friend.” I’m working away on caps/beanies for family, coasters for my dad, and baby stuff for our first grandchild.

    I got referred to the “next level” GI doc. Will have my procedure next Wednesday. I think I posted this already, but in I case I didn’t here is the “copy and paste” from my patient portal:

    ESOPHAGOGASTRODUODENOSCOPY, FLEXIBLE, TRANSORAL; WITH TRANSENDOSCOPICULTRASOUND-GUIDED INTRAMURAL OR TRANSMURAL FINE NEEDLEASPIRATION/BIOPSY(S) (INCLUDES ENDOSCOPIC ULTRASOUND EXAMINATION OFTHE ESO

    How’s that for a mouthful? Did they run out of characters at the end? At least I’ll be out for it.

    Gotta run. Waving hi to everyone!

    Carol

  • shanagirl
    shanagirl Member Posts: 380
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    @sunshine99 ln your pocket for your esophagus procedure🥰🩵

  • mara51506
    mara51506 Member Posts: 6,246
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    Emac, sorry about the mixed results as well in your MR. In you pocket for scans.

    Sunshine she did and I did mention that I did not like that. I told her if she was not feeling well, to please take care of herself and take a day off the call. Look after herself. She did apologize and I will not bring it up again. I give her a little slack as she is brain injured and severely disabled. I will listen to the tone in her voice at the start as well as I can tell if its been a bad pain day and tell her that I am giving her a break and let her hang up. I do know the calling volunteering means a lot and she feels I am kind, willing to give her chance again.

    I have my Cat scan of my head without contrast next friday to see if the bleed is getting any bigger, I imagine if the same, this will be an extra scan, pocket duty that day would be good. Still not super worried as I imagine I would have been hospitalized. Watching for symptoms similar to my brainmet symptoms, head pressure, nausea etc and will wait and see what happens.

    Had a chopped up sausage, egg and hashbrown, it was filling but good. Looking forward to pavement showing up before snow on my street so I can enjoy the bus and also paratransit trips as well to the hospital.

    In everyone's pocket who needs me and have a good day all.

  • runor
    runor Member Posts: 1,613
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    Hello, hello Everyone!!

    It's been 5 minutes since I dropped by. Did some quick reading to catch up and as always there is admirable support and love mixed with the tragedies. It's weird. I come here with hope and reluctance in equal measure. I want to know how everyone is doing and dread the sad/bad news that is also part and parcel of breast cancer. This is a place to cheer and weep all in the same minute.

    Shortly I turn 60. As I look in the mirror and wonder who this sagging, blobby, gelatinous creature is, I am struck by fact that in 2017 I did not think I would live to see 60. I no longer get up with cancer on my mind the second I open my eyes. Took a couple years for that to fade. But when I read about people with my same diagnosis ending up with metastatic cancer years later, I am fully aware of the potential disaster lurking around the corner. I am lucky to be turning 60. I am trying to be grateful but mostly I look at my thighs and stomach and think…what the hell is happening?!

    Hub continues to have increasing issues with his mobility. Walking is a struggle of pain and ankle instability. He falls down a lot. He tires quickly. I see him struggle to do things that he did with ease 5 years ago. And this isn't just a small bit of age related decline. This is a drastic and sudden drop in ability. He is not in a good mental place.

    So, aging is a blessing and a curse. We often say to each other that we need to be happy every day and at the same time accept that as we get older and everyone we know and love gets older, more and more sad and bad things are going to happen. I have great admiration for people who accept the reality of life and live well anyway. I hope to get there one of these day…but not while I look like this in a pair of jeans. Like, seriously?

    I am sending hugs, love, light and joy to all of you. To those worn out by this damn, dirty disease, I stand silently and ooze good vibes, but do not expect anything from you because I TOTALLY get that thing where you are done, drained, finished, shut down, have no more to give, not even to the cheering squad who lovingly bounces around you with pompoms. Pompoms of love. Pompoms you want to throw to the ground and stomp on. Yup. I get it. So I do not cheer, but love with low key energy. You know what I mean. It is amazing to me that more well meaning people who say, "you got this" are not poked in the eye with a finger while cancer person says, "and now you got this (poke)". But we are a civilized bunch and shall not perform eye pokes on well wishers, no matter how annoying they might be.

    My heart felt the need to drop by. I think of you all. This place was my first line of defense and the place I found people speaking my language and walking my walk. For that, the gratitude is eternal. Hugs.

  • shanagirl
    shanagirl Member Posts: 380
    edited November 2023
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    Hi lovely everyone here in the Livingroom. I was just over by the Verzenio thread to find out if anyone has decided t go off treatment because of the side effects. I’m really feeling down and discouraged, instead of being grateful that I’m stable with stage IV metastatic Breast Cancer in my bones only. Im feeling sorry for myself after 13 years of being “cancer Free” following original treatment, only to have it suddenly show up again in a CA.27 blood test in a 6 month follow up with my onc..who immediately put me on Verzenio and monthly injections.🙁

    Today I’m wondering if I should just go off the Verzenio or at least decrease the dosage to 150mg once a day. I really feel the sheer exhaustion and weakness is so overwhelming. The D issues are also really interfering with being able to go anywhere and feel comfortable. Even though l,m stable, l feel my quality of life is not worth it. Has anyone gone off Verzenio and just stayed on Faslodex and Xgeva monthly injections?

  • intolight
    intolight Member Posts: 2,240
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    @shanagirl I had my Verzenio dropped to 100mg twice a day. It is way more tolerable and I have had good results for a year now. It might be worth a dosage reduction first before you drop it entirely. I am still on Faslodex and Zometa with it. My CA.27 is at 7. I am still stable although a couple of those little buggers still show up on the scans, but without growth. But my diarrhea and weakness is manageable at this dosage. I can go out and even just came back from a cruise. I just sent in the paperwork to try to get another year of my Verzenio without cost from the Lily Cares Foundation through the oncologist office. There is a receptionist there whose job is to help manage prescription cost. Her title is "Medication Access Specialist" if this helps you know whom to ask for.

    Sunshine, we used a space heater occasionally when I lived in San Diego also. We turned off the heat source from the circuit breaker not really needing it. Now, we have whole-house heat and a fireplace within 6 feet of where I sit, and I still use a blanket. What a difference! I do miss San Diego weather!

  • chicagoan
    chicagoan Member Posts: 1,005
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    Shanagirl-Have you been on Ibrance yet? I think it is a much easier drug to tolerate than Verzenio. If you haven't tried it, check with your oncologist and see if you can switch.

  • sunshine99
    sunshine99 Member Posts: 2,687
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    runor!!! How nice to see your name on the feed! I'll cheer you on, but never with pompoms - I promise.

    Love and hugs,

    Carol

  • micmel
    micmel Member Posts: 9,969
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    Totally am thrilled to see you Runor. I love the way you write. I’m sorry hubby is having issues. I will keep you both in my thoughts . Glad to know you’re doing well. Good to see you. Thanks for letting us know how you are. Hugs.

    in pockets for scans. Tests results. Hugs to all.

  • seeq
    seeq Member Posts: 1,128
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    Shanagirl- I responded in the Verzenio thread, but I have been on Verzenio 100mg since April/May 2021. The gastro issues are much more manageable and I have more energy than I did on the 150mg. I also take Vitamin D3, which I think helps with the gastro issues - I've taken that for IBS-D since before my cancer dx.

  • sondraf
    sondraf Member Posts: 1,628
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    Ladies who have been on dexamethasone - when can I expect the side effects (no sleep, carb cravings!) to subside? Ive been able to go down to a half dose and I dont think I will need this much longer, but wow I need some sleep. Or maybe I dont, I seem to just go and go until I hit a wall. I cant cook and bake any more, the freezer is almost full and we have food for weeks at this point!

    Rainy and gross weather here all week with the big storm that came in, but I have been able to get out and about and even went to the grocery store yesterday on my own for the first time in oh, probably 5 months. Hubs is headed to the football match this afternoon so I am planning on making the components for an involved butternut squash lasagna to bake tomorrow (thanks veg box delivery!). Going to try it with tofu ricotta:

    https://www.feastingathome.com/butternut-lasagna-with-mushrooms-and-sage/

    And in other wildlife/cooking news, I was about to make chicken meatballs the other night when I opened the ground chicken packet and annoyingly the meat was starting to go off. So I wrapped it up in a bag and put it outside on a patio chair until hubs could sort out trash the next night. We both thought the other had thrown it out, and no signs of it anywhere in the yard. My money is on fox as the cats have been on patrol more lately and tis the fox season. They are big suckers too, more like medium dogs than those cute little black footed things at my parents, though they need to jump 8 foot high fences to get in our yard. I do appreciate the surgical cleanliness of the operation though - the bag was there and now its not, no muss no fuss!

  • shanagirl
    shanagirl Member Posts: 380
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    @intolight wow your CA.27 is sooo low! That”s great. My lowest was 24-25. Thankyou for you thoughts on a reduced dose. I’m contemplating this suggestion to my Onc.

    @seeq thank you for jumping over to this thread too. Yes. The gastro issues interfere with my life. For instance today I’m cooking sweet potato casserole with graham cracker crust and pecans., also making Eggnog cocktails……I’m doing all this today to bring to a “FriendsGiving” turkey & ham dinner tomorrow at 1:00. 

    @chicagoan No, Ibrance. My Oncologist who has been treating me since 2009 was very firm on the Verzenio combo of meds when my Stage IV showed up in January this year. He knows me and my type of cancer so he put me on the Verzenio right away. I’ve read somewhere that Verzenio treats CK/46? My Onc warned me about the diarrhea and nausea and said to take Imodium and nausea prescription he gave me, and to keep him updated on the diarrhea. So I don’t know about the Ibrance.

  • shanagirl
    shanagirl Member Posts: 380
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    @seeq I play around with my dosage of. Verzenio. Like I wont take my morning dose today until this afternoon and skip tonight and tomorrow morning. I’ll take my next dose after the party tomorrow so I can avoid side effects for th Friendsgiving dinner at m neighbor’s house tomorrow. Sometimes that is the only way I can have a social life by switching around dosages. I do take D3 every day also and a one a day, zinc, B6, Inositol & biotin supplements.🩵

  • chicagoan
    chicagoan Member Posts: 1,005
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    Shanagirl-Kisquali, Ibrance and Verzenio are each CDK4/6 inhibitors. https://www.drugs.com/drug-class/cdk-4-6-inhibitors.html

    Currently Kisquali is considered to be the most effective based on current research but it also has gastro side effects. Ibrance has been extremely effective for me with no serious side effects. I am a little skeptical of why your doctor would only consider Verzenio-could he/she possibly be getting incentives from the drug company to prescribe it? This is unfortunately common and Verzenio has struggled to find a market because of the debilitating diarrhea it causes for many patients. It's your life and body, but I would revisit this with your oncologist. Research has shown that there is a longer period of progression free survival with a CDK 4/6 inhibitor rather than a hormonal blocker, such as Faslodex alone, so please don't drop Verzenio without pushing for Kisquali or Ibrance.

  • sunshine99
    sunshine99 Member Posts: 2,687
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    Can anyone compare the size of the tablets of Kisquali vs Verzenio vs Ibrance. I've been off Ibrance since July since I can't swallow it and ended up in Urgent Care twice with vomiting and dehydration. I will have another procedure to try to stretch my esophagus next Wednesday. I have scans and my MO appointment after Thanksgiving.

    Carol

  • emac877
    emac877 Member Posts: 688
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    Shanagirl - You have every right to complain. Just because your bone mets are stable doesn't mean that this cancer hasn't upended your life. I was stable for almost 4 years on Verzenio/Faslodex and I was always talking to my doc about dose reductions or ways to make it more manageable. I never was able to get back to my pre-cancer state of energy on it. I felt like I suddenly aged 20 years and that change to my physical and mental well being took a while to adjust to. I would just offer that we are here for you, especially for those times you need to vent.

  • mara51506
    mara51506 Member Posts: 6,246
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    We all have earned the right to complain about what we go through. I try not to complain to myself because my mind will circulate that thought forever. I still have random thoughts about people from 30 or more years ago, I just imagine a foot kicking them out.

    Made a huge Walmart order, got some beefless ground this time, a cheddar popcorn seasoning to use as actual seasoning, 2 bagged salads, fettucine pasta and smaller meat pies this time.Also got white

    For now I am going to wait for groceries, could not decide breakfast so keeping simple with some noodles and cheese melted in with little garlic spread, might add some bacon bits and small amount of caesar mixed with mayo, no more than a tsp of each.

  • sf-cakes
    sf-cakes Member Posts: 572
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    Hello everyone, I just returned from a short trip to Santa Fe and was relieved that I had some energy - at least enough to walk along Canyon Road where there are many, many art galleries. My friend is about 15 years older than me, is very active, but said she was enjoying the strolling gallery tour with me. Saw beautiful paintings and sculptures that made me deeply grateful to still be alive. If I had sacks of money, I would've bought a ton of art! But I don't, so I took some gorgeous photos of outdoor sculptures. What a cool town Santa Fe is.

    Had one of my favorite nurses for my Zometa infusion yesterday, now just a little tired today, so laundry and Father Brown reruns is my total agenda for the day. Thinking of you all.

  • AJ
    AJ Member Posts: 226
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    @sf-cakes , I love Santa Fe! And all of New Mexico

  • cookie54
    cookie54 Member Posts: 741
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    sfcakes Wow those sculptures are amazing! There sure are some talented people in this world. So glad you enjoyed your trip. Hope your energy has returned today.

    sunshine Happy Bday to your DH hope you enjoyed the apple pies. Glad you are keeping yourself busy with baking and crafting with all you have going on, great distraction. I need to pick up some winter crafts to keep me occupied. Ok fingers, toes everything crossed that the next level doc can figure this out! I admire your ability to keep pushing on. This esophagus has been such a thorn in your side and I pray there is an answer this week.

    Hi runor I remember seeing you on various threads before. Glad you popped in and are doing well. Sorry to hear your DH is struggling but I'm glad you feel well enough to help him. Yep agree, thankful for every birthday regardless of the number ! Celebrate you!

    Hi to all here and those following along, always thinking and praying for all. Thinking of dodgersgirl this morning…..