My Husband, My Life, My Love, My Family, My Cancer
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Good Morning Beauties. I’m having my morning coffee with you all.☕️
@gailmary I’ve also heard about Claritin mentioned for bone pain. Is that Claritin D or just the Claritin. I’ve been taking the generic Claritin (Loratadine) for several years daily, prescribed by my PCP for my seasonal allergies 🤧. I ever knew it was for bone pain. Also my Onc prescribes low dose Effexor XR for Hot Flashes & night Sweats. I take 1 tablet a day. 75 mg. At the higher doses it’s a good antidepressant for depression.
So last night I didn’t sleep soundly and kept waking up with stomach pain and heartburn. Couldn’t eat yesterday either. I’m wondering if my hiatal hernia is acting up… Geesh it’s always something. I hope this Ophelia weather lets up soon. It’s so dark this morning.
@threetree you’ve been on my mind. How is your pain from your fall with all this weather barometric changes. I know it makes your body more sensitive to pain. I hope you are continuing to heal from your bruising. I want yo send you gentle hugs 🤗
Waving 👋 Hi to all you beauties💗
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Shanagirl. Good question. It is the plain Claritin (Loratadine). Hot flashes were never a problem but my MO prescribes that Effexor XR too.
I have little pain even with mymy arthritis from barometric pressure changes. But then I take both Claritin (for allergies) and Paxil for anxiety, depression and pain. It used to help my insomnia. Now with new PCP I may try to find a different antidepressant to help with all that plus sleep. So tired of all the side effects.
Threetree, I wonder if either would help with your pain from the break.
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Just read the news of nicolerods passing, my condolences to family and friends and of course everyone she met here.
I remember when I had to get my Neulasta injection with the first chemo and I was recomended Claritin before, during and after the shot and it did remove my bone pain. Unsure if the bone pain is chronic due to cancer if there is the same effect.
In process of starting my day, light daily housework, making money on mobile games and TV ads I get paid for. Laundry coming up. Waiting on cat litter delivery so sticking around house.
Breakfast will include chopped beans, corn and wheat bran, deciding between poached or fried egg and a hashbrown, perhaps cut cooked hash brown in two since I am having a lot of food.
In everyone's pocket who needs me and have a good day.
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Candy, it’s hard to remember all the questions we have for our doctors, right? And who do we ask about what? Hair loss? PCP or derm? Rib pain? MO or ortho? Sheesh…
Aj, beautiful sculptures or carvings, or whatever they are. That would make me happy, too, to come across those.
I get labs before every MO visit. She does CBC, CMP, Cancer Ag 27.29 and CEA. I track them on a spreadsheet because I love spreadsheets and like to see my trends. I do the same with my weight. What did I ever do before Excel? Does anyone remember Lotus 123?
Good morning, Theo!!! Do you know how adorable you are?
Losing another sister or friend to this damned disease never gets easier. It just sucks!
Mara, I troll (sorry, aj) videos for good tutorials on both crocheting and knitting. My most recent one is a site called “Good Knit Kisses.” She has both left and right-handed videos and they make sense to me. The hardest part is “reading” my work. Is that a real stitch? Do I skip this one or crochet into it? My friend was trying to teach me how to crochet a circle, but I just wasn’t getting it. She finally said, “Why don’t we start with the basics?” and had me practice just chaining. Now I’m practicing single, half-double and double-crochet stitches. I found a huge skein of yarn that I’d stashed away, so I’m using that for my practice swatches.
Shana, I’m sorry this was a rough weekend for you. It’s discouraging when we just feel blah. Nothing is really wrong, but nothing is really right, either.
Threetree, I’m hoping you continue to heal. “Only” your shoulder? Isn’t that enough? I think all those surrounding areas that are now compensating are going to get a workout. Yikes. I’m so sorry…
Waving hi to Irish, mel, gailmary, sf-cakes, and anyone I haven’t mentioned.
You ladies are the best!
Love to all,
Carol
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sunshine99,
When you set up your EXCEL spread sheets for CBC and CMP did you put the test components across the top (Columns) and dates down the side (Rows)….and with CBC and CMP each on their own sheet? I used to be able to get a comprehensive summary from MyChart, but they've changed the display and formatting (now as a pdf) making it far less useable now, in my opinion. So I'd like to set up an EXCEL spread sheet. Thanks for any suggestions.
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Morning ladies we were away for the weekend at our niece's wedding it was a beautiful day despite the awful weather. I can't wait to see the sun it's been days of rain it makes me appreciate it that much more. Of course I am so very saddened to hear about nicolerod I hope she made it to her destination and was surrounded by all who loved her. May her beautiful soul rest in peace.
Theo is a bright ray of sunshine that always makes me smile!
AJ those trolls are quite amazing a real piece of art .
Shana I know you have the dreary weather too which can make you ache even more. I hope you have a better day today.
threetree Hope you are healing a little more each day and the pain lessens.
Big hello to all here, wishing you a peaceful day.
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Last night I was watching TV. A new commercial for Kisqali came on (for those that don't know that name, it is a CDK 4/6 inhibitor, same class as Ibrance and Verzenio). It showed a woman jogging down a long set of steps and into a park. She meets up with a friend, hugs, and both continue to jog together. The announcer says something to the effect "not just living longer, but living well with MBC".
I know we have mentioned on here about the annoying commercials that are not realistic in showing MBC. But last night I just thought "am I doing this cancer-thing wrong?". I am not on a CDK 4/6 inhibitor anymore. I was on Ibrance for 4 years and now I am on a PARP. But, I certainly don't feel like jogging. I went to a church bake sale a couple of weeks ago. All I did was sit in a chair in a booth for 3 hours and came home exhausted.
The commercial made me feel like I suck at this cancer-thing. Like I am doing it wrong. I should be out and living. I am stable. I take 2 pills in the mornings and evenings, not an infusion. I scan only every 4 months. I see my MO only every 4 months.
In my mind I really know that the commercials are false and I am doing ok, but I wish the drug makers could understand that the commercials make us feel bad about ourselves.
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I agree Candy. Then others look at you like , what’s your story. If they are doing so well. You should be running all around doing fantastic life things. I feel the exact same way. I turn them off , after I announce how full of shit they are. ! I’m with you my dear. Fatigue from cancer is paralyzing. I sit in that same chair and am extremely exhausted daily. You’re not alone at all.
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Good Morning Beauties🥰
@candy-678 I saw those commercials. More stuff to guilt women into thinking they’ll be better with their product. Right now I feel safe on Verzenio to treat my CDK 4/6. My onc doesn’t let me worry about all those specifics by not discussing with me anything that worries me. I know he knows which cocktail works best for my own type of bone mets.
@cookie54 I too am getting weary of these dark rainy days. I do like th cooler weather though.
@sunshine99 I also like watching the how to videos on acrylic painting techniques. I love painting, but have not even had the energy to keep up with it these past days. I’ve been working on a portrait of a mastiff who was my friends dog who recently passed away. I wanted to do the painting for her. I have finishing touches to do, varnish or resin it and frame it before I give it to her. But lately I just sit her and look at the canvas on the easel and feels guilty for not finishing it yet. I also loved crocheting in my younger years but have forgotten a lot.
@gailmary my bone pain levels and hot flashes have greatly diminished since treatment, but I do get them after the 4 week injections of Xgeva & Fasoldex. Yesterday was day 8 since the injections but I still felt like crap. Seems like they are becoming cumulative. Yesterday I could eat because of nausea and headache and a horrrible metallic taste in my mouth. Nothing tastes good. I feel like gaggin sometimes. It seems i get this way after those shots. I can’t wait. To go off these meds next week. My Onc said I could skip them the week we fly down to Florida for a family reunion..
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Shanagirl~I get xgeva shots also and they make me feel like crap. All those commercials never leave time to read the fine print. When you get the medicine the packaging it overwhelms you with information that is boggling to read. It’s been rainy for what seems like a week. My eagles won though 🦅! Go birds. We need sunlight!
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I think the adverts maybe give the doctors a false sense too. 'You have fatigue? How can that be, the drug rep said that wasn't a usual problem on this drug?' Goddamn right I have fatigue, isnt that what the blood tests say? Heh - I wonder if herpes patients like to go kayaking in sea caves like in the adverts (and how does that relate to a herpes med in the first place? Is it all metaphoric? Why do I remember the Valtrex ad?).
Yesterday I felt well and walked with husband 12 minutes to the store, did some shopping, and 12 minutes or so home. By evening I was both nauseous AND starving, and completely wiped out but unable to sleep. Felt terrible all morning. Pretty sure its the clot recovery as my bloods are fabulous on Xeloda (irony!). This was the longest walk Ive managed since July, so about 40 minutes total. Its getting better but so slowly - Sunday I was able to do a marching workout and arm workout and was fine. But I guess a normal walk to the store I used to do like no big thing last year was too much. Ah well, it'll get there, baby steps. At least I dont have chest pain or breathlessness.
Hope everyone is having a lovely autumn so far, last few days of sun here!
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Candy, I am right there with you. You will never catch me jogging. Facebook also gave me a memory of posting about walking to and from the mall and then walking for another hour, that would not happen now, I need PT daily and a cane to feel confident in walking, PIA. I still don't believe it is brain related but have to wait til MRI next month.
I am having Herceptin tomorrow, 1st time having paratransit booked since the last time, hopefully they get up the street or else I will take the bus. No UBER, too expensive.
I did have the most frustrating call with old ISP because it did not appear the account was closed. It was actually a chat, it was not closed, they said there was no note account should have been closed, sent them a copy of the first chat, nothing happening, finally they confirmed it will be closed since I am on a new service but that they want 250.00 to send back a broken modem, will not be bothering with it, they can charge if they want to. It will be expensive this month as paying for two services, will be cheap this month for food. I had pasta and some canned chicken for breakfast, used the vegetable seasoning mixed with a bit of mayo, was really good, can probably keep the chicken for another couple of meals with beans and eggs. Staying inside as usual and working on some extra funds to pay bills or whatever I want to do.
I hope everyone has a good day and in pockets where needed.
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It would be pretty amazing if Kisquali made me run down a flight of stairs and go jogging. I didn't do that sort of thing before MBC and had quit running for buses since it made me out of breath and worried about falling. Stupid commercials. I wasn't living a glamorous life before either so that probably wouldn't happen with new drugs.
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@candy-678 I agree with the others. You are not alone and are doing nothing wrong. These meds sap our energy and our joy, but they do allow us to still be with our loved ones. The outside world has no clue, and sometimes even those close to us do not understand often fed by the lies of big pharma. But we fight on.
@mara51506 Charge you for the broken modem and to return it? No! What company? We were told to return the modem or be charged for it when ours broke. Could that be what they meant?
@sondraf Good job with the walk. I sometimes can walk with my DD to my DGD bus stop (1/4 mile) sit to wait, then walk back. If it is hot I don't do well, but otherwise I can make it. I have to sit a bit once home before I can get up and start dinner. Some days I just can't do it. I can walk around the grocery store just fine for about 30 minutes or so. The difference I think is carrying my mini oxygen machine which weighs about 8 pounds. At the store it goes in the basket. Perhaps I should put it on my walker and do that even though I don't need the walker. Hmmm…l see how well I do on my trip. We are hoping I won't need it at sea level.
@micmel I only get the Faslodex but it sometimes takes me a week to recover. This time I still have some pain at the shot site and it has been 12 days! The nurse really hurt me this time. Arghh! @gailmary I agree with you that they are probably accumulative.
It has been warm and dry here in Colorado and will continue to be in the high 70s all week. Probably our last round of warmth before the cold comes. It is supposed to be maybe 50 and rainy for our Alaskan cruise next week. I am struggling to know how to pack! My plan is to push on through as much as I can knowing if I must I can just sit on the ship and let it all happen around me. At least I won't have to cook for two weeks!
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@candy-678 yeah commercials aren't very realistic, kind of like how burgers look on TV but the real one is not so great. Maybe what we expect of ourselves is also not realistic. I keep trying to ride bike and go hobble walking but it's hard to accept that I can't really train or beat myself into shape like I want to.
@shanagirl I'm on Faslodex too and I think the fatigue snowballs with Verzenio. Some days I can ride or do garden things but the next day or hour I have trouble standing up, feel nauseous and taste metal, hot flashes. I keep having times when I'm too tired to move but it hurts to sit. The back surgery and bone mets ache and I have the muscle cramps from spinal cord damage. I want to crawl to a hot springs and stay there.
I have an acrylic painting started too but i can't hunch over my projects and I get tired standing. It's hard to get into the creative mood. Also I have trouble with water lol got any tips? I want to do more realistic stuff but being perfectionist stresses me out. Maybe I'll just keep doing the impressionist look. It's getting dark earlier and I can't do much outside so maybe I'll get the brushes out.
My sympathy and a hug to those here who lost a friend.
Here's a painting I did earlier, from a pic I took in Yellowstone.
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Candy, I despise those commercials. I also don't understand the point of commercials for MBC, either. It's not like I'm sitting at home wondering "what should I do about my MBC?" And then see the commercial and call my doctor, "Ooh, I saw a commercial for a medication that looks great! Can you prescribe it for me?" Puh-leeze. It's not like erectile dysfunction, where, sure, a med would be nice, but ED isn't going to kill anyone.
Scan results from yesterday reveal no new cancer (very good), but the fracture at my T9, where I had the vertebroplasty, has not healed at all. Sent a message to the doc who did the procedure, he got right back to me and said a number of factors could be preventing healing. I will talk with my MO about this more at our appointment later this week. Thankfully, I'm not having any more pain than usual, but it makes me kind of nervous to just walk around with an unhealed fracture. There is bone cement in there so I guess it can't fracture any further?
It's always something, isn't it. Guess I'll put on my fashionable jogging outfit and go meet a friend for a run - lololol, that will never happen. Stupid commercials.
Ooh, mkestrel, I love that painting!
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Love the painting!!! Beautiful
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Oh those commercials how ridiculous and unrealistic are they???? All rainbows and sunshine..sure that's how we are living with MBC. I could not agree more. I'm still holding out hope because a couple months ago I participated in a live online survey about those commercials. I told them the absolute truth about how unrealistic they are. After the first round they did revise it a couple times and by the last cut got it right. Well still haven't seen the Trodelvy commercial yet…hmmm probably rather show the rainbows and butterflies. Infuriating for sure! Nobody get's it ladies but us…that's why I love you ladies💓
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@mkestrel , love the painting! So talented! I like your signature, I’d rather be hiking. I really have to choose hikes with Rey little uphill now days.
@candy-678 those commercials suck. Oh, look at me! I’m so glad to have MBC! Think I’ll run a marathon! I’m already grieving about not being able to do the physical activities I could do before diagnosis. I really understand your feelings about “doing cancer the wrong way.” Like it’s our fault.
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sfcakes Yaaaay for good scan results! Sorry about T9 still not healing but yes glad you have less pain! I would think the bone cement will hold it very well, fingers crossed.
@mkn86 Wow, love the painting!
mel I think the Eagles have finally found their groove…we'll see if they look as good next game too.
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@mkestrel That is such a beautiful painting! I wish I had that talent or patience. I like to do the paint by numbers as well.
I agree about the commercials. I am on Kisqali and certainly don't feel like any of those women. Thinking of jogging is making me tired. I agree, it makes me feel like I am doing this wrong.
Had my endoscopy last week and it went well, nothing to see other than acid reflux. They did take a few biopsies but hopefully they are ok. My CT got pushed to this Thursday now because of some of the symptoms I have been having with pain. I am praying that all is ok but obviously worried. Trying to distract myself, a little easier said than done.
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I’m here reading about all of your comments on those commercials that make it look so glamorous on that cancer med for bone mets. I’ve seen a few different ones and they make it look like these stage IV women are so vivacious and energetic and having a wonderful time. So not true. I feel like shit today…sooo dark and rainy, and I have virtually no motivation to paint, or even focus on it for all the reasons the @mkestrel mentioned. I’m like that too.. And by the way that painting is beautiful work @mkestrel .🎨👍. I was just viewing some paint videos on YouTube and just can’t even feel inspired to do anything today
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(LivingIVlife)
Saddened to read about nicolerod passing. Yes another wonderful woman dying from this disease.
When I see the commercials for MBC treatments I just say ya right and turn them off.
Sfcakes- yay for stable scans. My sister has the cement between five of her vertebrae and is in constant pain.
Mkestrel- beautiful painting! You and Shanagirl have a special talent!
Mel- those pictures of Theo are priceless. Give her a big hug for me!
We have had beautiful weather here and it looks like it will continue on. Nights are quite cool but the days are sunny and about 20 degrees Celsius. I love fall. Can't take the heat of summer. After breakfast today I had two puppy eyes staring at me so took Belle out on long walk through woods and along the beach area down from our house. Couldn't believe the amount of erosion especially after the hurricane last year. Tide was out so that was good. Got home and worked in yard for a bit. Couldn't move after that with back pain and pain all over. Was emptying the dishwasher when hubby asked if I wanted him to do it- well hell yes! Took Tylenol and laid down with heating pad. No jogging for me!
Waving hello 👋 to all. Have a good peaceful restful night.
Debbie
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mkestrel, I love the painting. I decided to try to watercolor and have been struggling to do something I like. I did decide to use my best paper. I'm not going to run out before I die probably. And if I do, I'll just buy more.
aj, Are you in the northwest? I'm in the Seattle area and haven't seen one of the trolls in the flesh yet. I love them and the fact that they're made from scrap.
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Here is the troll on Bainbridge Island! My husband and I with our dog illustrate how huge the troll is ! I am hoping to visit all the PNW trolls this year :)
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@wren44 , yes I’m in Seattle too! And @aprilgirl1, you too?
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AJ , I'm in the Seattle area:)
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@mkestrel what a beautiful painting! Wonderful colors.
@intolight I was so excited to finally go to the store and see products in person lol. But carrying a basket with stuff and managing a cane is just a mess (especially as stores are so much smaller here and full of meanderthals - for an area with a LOT of retired, you would think they would be more aware) and then carrying home well.. yeah no. I bring assistance :)
Alright, I ordered an underdesk mini-bike (DeskCycle2) this morning so I can work my legs more frequently through the day, I just can't get the distance/heart benefits walking and Im too afraid of tripping on all the broken pavement and tree branches. This way hubs can also use it at night too or during his boring work calls. I do have an upright bike, but its going to take some doing to get me on that thing again in the next few months, and I have a feeling Ill be starting from the bottom on all this.
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