My Husband, My Life, My Love, My Family, My Cancer
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Reading along and trying to remember everything that I wanted to say! I, too, wish the pages had more posts on them, like they used to.
Mel, the fatigue truly is awful. I push myself as much as I can, and then feel bad later. Trying to find balance with it.
Moth, that shirt you received for mother's day is soooooo great!
Mara, good grief, your property manager/owners sound like idiots. Sorry you have to deal with all that in your own home.
Emac, I hope you get answers about the bleeding, I've heard of several women from my online support group have this problem and I'm hoping it can be resolved for you.
Rosie, sending you support for the results of your latest scans. Praying that a different tx or different combo of tx can work.
Mae, great news that your spine is clear! Hoping for positive tx response for you. And I recently read the Thursday Murder Club, loved it!
Sondra, your comment about cancer putting that little film between us and others, yes to that. I feel that often. And Candy, the cancer thoughts and trying to be part of a world that doesn't feel normal, yes to that, too. You've both expressed so well what I feel often and try to keep to myself. Grateful to you both for your honesty here.
So grateful to be able to be with my mother after my Dad's passing. Bought some peonies that were still tightly in bud, and they've slowly opened up into true gorgeous blooms.
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Mae - I didn't catch that recent update, but thats great to see its NOT lepto. I really hope you get a good long time at your beloved cabin, free of cancer worries!
Candy - that is a really lovely gesture by your church, I hope it made you smile the rest of the day!
OH and I working through the Thailand trip tonight, somehow we always automatically divvy up trip chores by our strengths and chip away at to do lists. I figured out the airport train/public transport system (there is a YouTube for everything!), he sorted out the government visa stupidity. I proposed timelines and found the right beach hotel, he booked the first two nights city hotel. I like to optimize the airline/hotel/transport side of things while he agrees/challenges ("are you sure you really want to walk in the heat to the hotel?") and makes the bookings and figures out the apps/electrical stuff. Makes everything so much easier!
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Mae, So glad to hear no lepto mets! I hope you hear soon what happens next.
Candy, How nice that you had a surprise flower delivery! I don't know if pics are posting again or not.
Emac, Adding my wishes that you get answers soon.
SF Cakes, The peonies sound lovely. I’m sorry for your loss of your dad. Thanks for the support on my scans. My MO wasn’t alarmed like I was, so it was good to find that out.
I had a callback yesterday from my MO about my scans, and I guess my liver “progression” doesn’t qualify as progression. From Feb mri to last week’s mri is only a total of 3% growth and he says progression is 20% or greater growth. So we stay the course for a few more months and repeat imaging. The new spinal lesions he said we’ll watch but they alone would not bring a change of chemo. So I definitely felt calmer after that phone call. (I will be starting Zometa with my infusion next week to protect my bones. 😳 a little nervous about that from what I’ve read.)
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I just got an email they want to come Friday. 🙄
Mae, so glad your spine is clear.
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Rosie- Good to read you will stay the course for now.
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Rosie, I am also glad treatment can stay the same as well for you too.
Well, the apppointments themselves for the MRI and the Herceptin went quicker than expected. Weird to see the cancer clinic almost empty again but I did not mind that.
I did UBER over to the hospital but without thinking about it, started walking home. It was harder to do this time, shows how deconditioned I actually am for walking outdoors. The warmth did not help either. I did not get lightheaded but my body was stressed and I was crying from that stress. I think I need to take my walker out and set to walking. if I tire out, it gives me somewhere to sit. It was never hard to walk home after appointments and I was disappointed so I figure, use the walker and perhaps just use it in general. It has a basket when I fold it down. I need to be in better shape than I keep myself. I also need to breakout my neck fans as well. The crying is done, the appointments went quickly and I am happy about that. I plan to strip down to boxers and bra now that the day is over.
As far as the electricians go, I don't mind staying home noon to 5 but if they don't show up, will tell the property manager to handle letting them in.
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Did anyone else notice that our avatars (or whatever they're called) are back?
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sunset. 0 -
Mae, I'm so happy there was not lepto on the scans. Stupid cancer scares. I know it still probably means maybe the dreaded head crown, and that seems to come every few months. Ugh.
Mara, sorry you had a tough time walking home. Hope the workers show up for you.
Rosie, thankfully, the Zometa first infusion is the worst and it's not like that every time. It was rough that first time. Tylenol, Claritin, and as slow a drip as they can.
Candy, it's almost as if the universe knew you needed that pick-me-up. I hope they give you some comfort that people really do care.
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Mel,
That picture is beautiful. Thank you for sharing it.
Mara, so sorry your walk home was not as planned. I hate to think of you crying…breaks my heart.
Candy, I am so happy about your flower delivery. Isn’t amazing how something so simple can do so much for us?
Ok, so I had my appt. on Tuesday, and it was a bit crazy in the infusion center. I saw the nurse practitioner first, and she reviewed everything (meds, etc.). She reiterated that they do not know (without biopsy) whether I have cancer in the lungs or liver. They believe it is sarcoidosis, and not cancer. I was due for a port flush, my Xgeva shot, and they were also all set to give me Faslodex. I told her no. I have not come to the conclusion that the benefits outweigh the risks (and the side effects). My MO came into the infusion center and seemed testy about me declining the Faslodex. I told her I still have some work to do before I can make the decision. I have had Faslodex in combination with other chemo drugs, but not as a stand-alone drug. Has anyone or is anyone taking Faslodex only? I’d really like to know what side effects there are.
So for now, I am only getting my Xgeva shot and that’s it. I am feeling so much better; I am not willing to give up the way I feel for any treatment unless it is something that continues to give me a good QOL.
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So I had my hip replacement on Tuesday. Discharged yesterday - pain is what I expected - everyone said I was great at doing ambulating. Walking was not bad but standing and sitting makes me see stars! Baby steps I know - each day should get better.
Mae - glad no lepto🎉🎉🎉
Candy - the flowers were a nice surprise 💐💐!
Laurie - you are great at self-advocating! Way to go!!!
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Mel- Beautiful sunset. Your neighborhood looks peaceful. Even with the houses close together, they are well-groomed and look nice. My neighborhood has close houses (maybe not that close), but some are ramshackle and yards are not so well kept up.
Mara- I was sorry to read of your long, hard treck home. You are an inspiration for keeping-on keeping-on.
Booboo- You do what you feel you need to do. I have not had faslodex, so I cannot advise you on the side effects. It seems to be an "easy" treatment, compared to other things we may be treated with. With my personality, I would want to definitely know if the lungs and liver are cancer or not. With bone-only mets those folks can live a long time. My "real" friend, here in my town, has bone-only and is stable at 10 years now with using Arimidex and Xgeva only. Faslodex would be used on you like Arimidex is with her? Along the hormonal pathway? I would say try it, so you are covering the hormone pathway for the ER+/PR+ of your cancer. If it has not spread to the lungs/liver, maybe you can keep it from spreading.
I am going to try to post a pic of the flowers, since Mel posted her pic.
Edited--- Goldens- Glad your surgery is behind you and you are on your way to recovery. Wow 1 day in the hospital!!! Our hip replacement folks stay for 4-5 days.
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love your flowers!! How special they can be!!!!!
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Candy beautiful flowers, they are just lovely.
Mel, the sunset picture was beautiful as well. Should mean today will be sunny for you I hope.
It is pretty hot in here today, going to ask DB to put my AC in soon, maybe not tonight but next week.
I am not planning much, grocery shopping with niece, DB and SIL so some walking required there. Planning to walk for 20 mins after meals on the treadmill to recondition my legs for the outdoor stuff. Paul Eugene may look after my body as a good paced workout, it is not the same. I also wondered to myself if it was the combo of the contrast dye used and then having Herceptin the same day that caused the exhaustion yesterday, never know. I still think bringing the walker is probably safest since I do sway a lot while walking. Starting to think I unknowing trip over my feet so will see if walking with my walker is better and use the poles as well.
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Dear BooBoo-As one of your virtual friends, I wish you would try the Faslodex. I don't think you would have the horrible side effects you experienced on chemo since this is only hormonal therapy. We want you to enjoy life with your family for a long time and this would help to keep your cancer in check. Here's a link from Cleveland Clinic. https://chemocare.com/chemotherapy/drug-info/faslo... You can always stop the Faslodex if the side effects impact your QOL but why not give it a chance?
Candy-What gorgeous flowers-they seemed to come right at the right moment to remind you that you are loved by many.
Micmel-Thanks for posting that gorgeous picture. So peaceful.
Mae-Happy about your news.
Golden-Best wishes on your recovery.
Sondra-Sounds like you and your partner have a great system for planning trips. You are the only couple I know that divvies up the work so well.
Now that the sun is out again my spirits are lifted. I tried Tai Chi the other day. It was very gentle but helpful as I rehab my leg. I'm trying our various free classes at our park district-it's a great benefit of living in Chicago. Today a friend and I are going to "Senior Stretch"-hopefully we won't crack each other up too much.
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Enjoy your day Chicagoan, sounds lovely.
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I can't keep track of what everyone said, and I'm afraid to scroll back, but here goes...
Mel, what a beautiful picture.
Mara, I'm sorry you were in tears by the time you got home.
booboo, I'm sorry your MO was kind of ticked off at you. I'm not in your situation, so I have no idea what I'd do. There are some days, however, when you just think, "Enough is enough!"
Chicagoan, did you ever think you'd be going to a Senior Stretch class? Isn't that for "old" people???
Candy, the flowers are beautiful.
Mae, just thinking of you...
I thought I was getting a UTI yesterday. It seems better today. If the symptoms come back, I'll go to the walk-in clinic and try to get a urinalysis. I'll confess that I've been Googling ovarian cancer. I have a love-hate relationship with Dr. Google.
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Mara, I'm glad your appointment went well, but sorry your walk home was so stressful. Your description of "stripping down to boxers and bra" made me laugh.
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sunshine99 , dont ,please dont Dr Google.
Booboo, faslodex, alone, kept my cancer from spreading for 2 years. I very slowly put on a few pounds in weight, if I had been more diligent I probably could have controlled that. I cannot remember any other damaging side effects ,but I was post menapausal, not sure if that makes a difference.
mara , sorry you ended up in tears after your walk. I have pushed too hard in the past and you feel so frustrated. With your plans, I hope next time it will be better . Good luck with the renovations in your flat.
Candy and micmel both picures are uplifting.
Mae , Hope you are enjoying your new place.
Golden , wow ,wishing you that speedy recovery .
chicagoan, I enjoy every time I go to a 'seniors' event .I never thought I would get this far. Keep on trying new activities, but as an ex teacher I ask you and your friend not to be too disruptive , I imagine you and your friend giggling at the back of the class. lol x
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I haven't been on for only a few days and WOW - it moves fast. I took notes this time
mae: I am so relieved to hear your spine was clear. I was so scared for you.
Sunshine: when I was retiring from the Travel Clinic I told the head nurse that I was going to get a Granny Cart and go shopping every day like they do in Europe. I live only a block from a High Street that has everything. So - among my retirement gifts the Clinic gave me a Rolser shopping cart. It is the Rolls-Royce of carts. Made in Spain, light weight, the illustration on it it is light reflective so you can shop at night or in the late afternoon on the Wet Coast in Fall. I love it.
Candy: what a lovely gesture from your church.
moth: your T-shirt is great. We all need something like that.
SF-cakes: I love peonies. A neighbour had a garden full of them and when they are open I hang over the fence to sniff them and hope my longing looks might prompt her to cut me a few.
Sondra: Off to Thailand. I hear it is a wonderful place to visit but I am just not good in heat and humidity. I hope you have a fabulous trip
mara: Your housing situation is just one long nightmare. I am sorry that you have to endure so much crap.
Sorry to those who I mix\ssed.
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Denny10, hahaha - I don't really consult with Dr. Google. He's a quack. When I was first diagnosed with Stage IV MBC, he had me convinced I was dying the next day. I fired him.
I do have an appointment with the Express Clinic to get my possible UTI checked out.
elderberry, right? You step away from the forums for a bit and suddenly there are pages of new comments. It's had to keep up with sometimes.
Carol
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sunshine: after the horrors of the "update" and not much happening it seems like everyone is up and posting/flying. Avatars are back. Good to see your Airedale. Hope you get that UTI addressed. Soon!
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Well, today I was still super tired and could only do 5 mins on the treadmill. I am not pleased about that but I do intend to go up by a minute per day. There is no reason I should not be getting more in shape than I am now. I have no co morbidities I am dealing with, no real pain etc. I will just need to push a little bit each day and take the walker out. It is still quite hot for my taste but maybe a morning walk would be better or just go to Walmart and spend the 10.00 I earned from a mobile game I play. We will see how that goes. I won't worry tonight since I will be shopping so there will be some walking with that.
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checking in again with so many posts
Mara- I am sorry for your dreadful walk home. I am in Ontario and it is hot! Take care
Candy- what a wonderful surprise for you. The flowers are beautiful
Mel- picture of sunset is inspiring
Mae- wonderful news on the spine results. I know you have a great attitude and will take what comes next in major strides
Booboo - I'm sorry to hear the MO was a little upset on your decision. At the same time give the treatment offered some thought. It is your decision to make and only you can decide but we all want you right along beside us.
Home from hip surgery in one day! Wow!
I have been kept very busy here in Ontario and have loved every minute of it but I told my dh last night I wanted to come home. Of course I won't leave until next Thursday but there's no place like home!
Saying hello to everyone I have missed.
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mara and Livingivlife: It is pouring here. Really pouring. My cloth shopping bag was literally dripping wet when I got back from the 1 1/2 blocks to Cioffi's market and then back again. I hung it off the shower head in the bathroom to dry. I don't want heat but I sure wouldn't mind a little sun. I hope the heat in Ontario isn't signaling that the summer will be a scorcher. I don't think I can survive another Heat Dome like we had last year. It made me long for days like today. Okay-- I am never happy about the weather but I am a Canadian after all and particularly a West Coaster and that's what we don. Whine about it being too hot, too cold, too wet.
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So, MO called, she and my neuro radiation onc aren't entirely convinced by the clear Spine MRI either. More testing for lepto next week, maybe a better MRI and probably a spinal tap, then a switch to Enhertu. The new med has done great in trials and has already been bumped up to the 2nd line for HER2+, it also seems to work great on stable brain mets, hopefully it halts further progression. Gamma knife deemed an unnecessary risk at this point, so we'll see how the systemic change goes. It's pretty much what I've been expecting, so the news is just meh, ok. Back to Houston next week.
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Mara- Hey 5 minutes is better than 0 minutes. Keep trying and add 1-2 minutes next time. It will build up.
Mae- Sorry to read they are checking for lepto again. Keeping you in my thoughts.
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Mae~thinking of you. Sending good vibes and thoughts. Travel safely. I love your attitude and I respect you so much .
Mara~ I also had a giggle about your warmth and the description you gave from your walk.
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mae, I'm so sorry. What a roller coaster!
Carol
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