My Husband, My Life, My Love, My Family, My Cancer
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Candy, That’s good to hear you’re noticing some effect of the steroid injection. I hope it does more over the next couple days and holds for a good length of time. And good luck with the rheumatologist appt. I hope you can get a plan to help from him/her too. You shouldn’t have to live with so much pain.
Mae, Great news on the body being stable!
If anyone watched the show Shameless, DH and I finally watched the last season and finished last night. What a ride. The show definitely got a little rough/raunchy at times, but the characters were endearing in spite of their flaws. I’ll miss seeing those kids who became adults in front of us, and Liam too, who’s still a kid.
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Mae- Woohoo on stable !!!!!
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Wow, I was behind three pages. I haven’t been on the site very much. My daughter, SIL, and grandson moved in two days ago. No time to do much, just trying to get acclimated. What an adjustment. Lol.
Mel, never say never that your son will be back. The reason for us is just temporary, as my daughter and her husband are having a house built. I’m glad your son is doing great.
Mae, yay for stable in the body. The dogs are so precious. I hope you have a safe trip.
Candy, I hope you get great relief from the injection. I had both hips injected with cortisone a few months back didn’t help at all.
I’m here for pocket duty for all who need it.
Sorry I may be absent sometimes. There’s just so much going on, but it’s a good thing.
Oh, and my tumor markers dropped another 16.5 points. It’s been a steady drop since I started Xeloda last September. So appreciative.
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Good news on lower tumor markers, kbl! Hugs from grandkids are the best!
Illimae- Stable is great news! Hope you will love your new place!
Hi everyone! I haven't checked in much lately. Not a fan of the new format, but I miss seeing you all.
Lots of pain lately, but scans say things are stable…planning to enjoy every day with a limp :-/. Heading back to Illinois for most of the summer. I need a big juicy tomato from my garden, but need to do the work first.
DD2's baby turns one this month. He started walking last week. Being here and playing with grands has been the best medicine. Licking brownie batter is good, too. Gives me a reason to get up and look forward to the day.
Sending you all warm hugs
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I write ~beautiful children how much fun that must be. It’s so nice to see you here!! I’m sorry for the pain, but thankful for stable. Sending you hugs.
Mae~ great news on stable. More to follow please ? Be safe on your travels.
KBL ~ family moving is a big deal no wonder you wouldn’t have time to be here! How wonderful. my Dd wants a house for sure. All of her friends are having babies, I don’t want her to hurry. My son either. He may not have any. He’s not interested honestly. Too young.
Rosie~Hello!! 🌷
Candy~thank you for the information! I’ll pass it along for sure.
Much love to all.
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Mae congratulations on stable. Great news and happiness to carry into your new home.
Candy I’m looking forward to hearing more good news about your injections. I have an appt for initial consult for steroid injections hips in June.
KBL wonderful your family is altogether now. ENJOY 😊
Iwrite thanks for sharing those precious pictures.
Now I want neopolitain cake!
Mara how do you make foam soap 🧼?
Mel how’s the volunteering going.
I have treatment appt Tuesday.
Lots of pocket duty this week! I’ll bring mudslide ice cream cone 🍦.
Waving hello and sending hugs to everyone.
Tanya
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none of the shelters have opened volunteers up For registration since Covid, there was also no Dogs in the local Branch. I’m still trying to find my niche for that. Hope I find it soon. Thanks for asking. We’ve called alot of places.
i did not sleep last night at all. Up at 615. Never for me. Never before 745 earliest. I don’t know what’s going on. Ugh!0 -
Candy - fingers crossed that you get really good relief from the steroid. I could be the poster queen for steroid injections! Literally within 12 hours I get complete relief. However when I got steroid injections in both knees this winter, the relief only lasted about 3 weeks. I did have the option of steroid injection in my hip. But given my knee injections didn’t last long, I decided it made more sense to just bite the bullet and do the replacement. My PCP cleared me for surgery (labs, EKG, physical exam all good). Saw palliative care yesterday and was told that they really only handle cancer pain. Since most of my pain is unrelated to cancer, they really can’t help. Was even told that despite being a teaching program (Medical College of Wisconsin) there is not a very good pain management program and patients are often sent elsewhere. I have an appointment with them on July 5th (appt was made in early January 🙄🙄). Will see what they offer.
Mae - great news on stable. What a wonderful way to move into your cabin in paradise. How do the pups do with travel?
Mel - I bet there will be dogs in your shelter before too long. Too many stories of pet adoptions during the pandemic going back to shelters.
Love those sweet kiddo photos. They bring such joy to our lives❤️❤️❤️❤️
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Goldens~I’m crossing my fingers. I want to take my time and find the right one. But……maybe volunteering isn’t going to happen anytime soon. Bummer. I hope they do get dogs and don’t. I hate to see them in cages.
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Rosie~loved shameless. Hilarious and very entertaining! Frank Gallagher was something else for sure. I also enjoyed everyone. Great show for sure. I was sorry it was over.
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Kbl- Sorry the hip injections didn't help you. The tech told me they help in 80% of patients. Guess you were in the unlucky 20%. Sorry.
Goldens- I hope your surgery goes well. Hip replacement recoup can be hard. I am sorry you had that experience with Palliative Care. I have Palliative Care, and my cancer is pretty stable, for now. I have mentioned several times about my pains unrelated to cancer. My Palliative Care doc says she is there to help with all my QOL issues. She has offered muscle relaxers and other pain meds (but I declined for now, so my fault) and she has offered to order PT. She said she wants to help with all my issues, not just the cancer ones. But, as I go along in the cancer journey, she will also help with cancer related things-- new treatment side effects, etc.
Morning #2 after hip injection update--- definitely improvement, but still stiffness with getting up and some pain moving certain ways and have to grab the wall. Stairs yesterday (outside my house) was still rough. I think it will be what it will be. The arthritis is still there-- bone on bone they say-- so that will not improve. And my back issues is giving me fits. I was up a lot last night with that. Sigh...
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Glad to hear stable in the body Mae, of course I want you to have safe travels.
Busy day around here today. I think there are electricians in the hallway as they are mentioning junction boxes, would be nice if they changed out the motion sensing lights as they only stay on about 20 seconds and makes it hard to see my lock. They are working upstairs. Unsure if I am getting a new toilet today as the email did not say today specifically but could be soon.
I am using both my actual oven and my breville convection oven to bake up more wash soda for the laundry so the apartment is pretty warm. I would go out today but since someone will need to get in, I feel like I should stay home instead until 4 pm. It is very hot in the apartment from the two ovens so windows are open which is nice, get some fresh air. Going to wait to take out garbage until the hallway work is done. I put on my wig as soon as I got up since it was 830 and they said between 9 and 4. Cats hopefully will just go to my room as of course they hate all the noise. In the meantime, I am just doing surveys and mobile games for cash and that is about it.
Foodwise, not sure what I want today. Probably the black beans and get some frozen veggie used up. I do have vegan hotdogs which I plan to chop up and put in the fry pan. I am also thinking rice and beans as a snack or lunch since I ran out of english muffins. Can season with anything I want. We will see.
Hope all have a decent day and in pockets for anyone who needs it.
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I'm so hoping for some pain relief for anyone here who's in pain. Pain is just the worst, and this joint pain from the meds can drive me slightly crazy at times.
I posted this in the Ibrance thread, does anyone here know the poem I'm talking about? When I saw my Dad for the last time last month it came up, but then we started fantasizing about all the different flavors of pie we'd like to eat 🥧 and I forgot the reference:
My Dad passed away on Monday night, at home in bed, with my Mum by his side (he has been very sick for several months following a stroke). I am taking some leave from work to spend some time with her, and also just walk around, looking at the sky and stars and beauty in this world. My Dad loved sailing, and I recall that poem about death, sailing out of sight beyond the horizon, those of us left behind can't see him anymore but he was greeted warmly by those in the great beyond.
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Mel - I think you are in the eastern PA region somewhere, no? Is there any option to either work (part time) at a doggy day care type place (maybe on the desk or something) or maybe start your own in home doggy daycare during the week for a few hours for a pup or two of people you know?
Got my hair cut today. Got hot Lebanese flatbreads and homemade hummus from the bakery a few doors down from the hairdressers. OH arrived home from Iceland with a nice box of chocolates so we are all set to have a good rest of the week here.
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Well, nothing is ever easy. The brain MRI showed new spots but different this time. There’s several and the appear kind of lined up along a ventricle, so it looks like suspected lepto again. They’re getting a spinal MRI scheduled asap and we’ll remain in the hotel through the rest of this week. Tumor board will me Friday. Likely options at this point are possible gamma knife, likely change to Enhertu, possible trial, possible whole brain radiation. WBR is least convenient as it would require being in town for a whole month.
Im disappointed but have been expecting this conversation at some point and I feel fine, so not devastated.
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SF CAkes sorry for the loss of your father. My condolences. It sounds like he passed peacefully. It will be healing to take the time with your mom in nature. Such a sweet scenario you wrote about with the sea and his love of it and sailing away. Sending hugs.
Mae that's unsettling news. You have a good plan in place with kind attentive doctors. I'll be there for pocket duty as you navigate through gamma knife, or whatever you decide on. Take care.
Tanya
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Mae,
I hope your docs can come up with a good plan moving forward. You always have such a great attitude about all of this, and I'm sure that your good common sense and calm personality will carry you through once again.
Thinking of you.
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SF-Cakes - Google is amazing (Dr. Google sucks, though) I think the poem you want is Gone from My Sight, I saw one reference that called it The Ship. Mixed references on who wrote it (Henry Van Dyke, Luther Beeche, Bishop Brent).
Mae - what a rotten development and rotten timing. You do sound very positive. I hope the plan the tumor board comes up with is quick, easy, and effective and you get to finish that move to the cabin soonest.
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Mae, well that sucks & I'm sorry it's happening. Hope your tumor board has an excellent plan for you asap
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Mae, I am glad that everything is stable from the neck down. I am also happy that you sold your house and will be ready to move into your cabin when things settle down.The results of the brain MRI is a different story. What a bummer! I hope you are able to have the MRI of your spine very soon so you know where things truly stand. The tumor board and anyone else who needs to be involved can then determine the best plan to move forward. I know that you take things as they come, and you aren’t overcome with fear and anxiety, but I also know that this isn’t what you hoped for. I suspect that disappointment is not the only emotion you are experiencing. I am sure the lepto Mets possibility is something you didn't want to revisit. I am holding you in my heart and will be thinking of you as I get comfortable in your pocket around the clock until things settle down, you start a new treatment, move into your cabin and relax a bit. I got a big bag Lindt chocolate truffles for my birthday last week. I and everyone in your pocket with me will probably eat them well before they melt, but you it goes without saying that we will set some aside for you. I am sending you a big (((hug))).
Hugsand prayers from, Lynne
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Mae - I'm sorry to hear about the developments but I am glad they have a plan. Definitely in your pockets for tumor board decisions.
Not much going on here. My work schedule has been sporadic, I am now finding myself with 10 days off after several weeks of having only one or two in a row. I slept most of yesterday and worked in the yard this morning. Tomorrow will be my labs and Xgeva/Faslodex injections and I usually am pretty wiped out after those. I'm trying to get as much in today as I can tolerate so I can rest tomorrow. We are having a welcome but weird day of sunshine and 85 degrees before we dive back into the 50's with rain so I flung all the windows open this morning to catch it while it lasts.
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SF-cakes, I am sorry about the loss of your father. I know he had been sick, and his passing was not unexpected, but that does not lessen the grief and pain. I wish you and your family peace and comfort atthis time. Memories of the sweet times you shared with him will eventually soften your pain with smiles.
Candy, It sounds like the injection has given you a bit of relief from your hip pain. I hope it continues to improve over time and that the improvement lasts a long time. Maybe the stiffness will lessen as you are able to more more. I hope so.
Mara, It will be nice for you to have a new toilet. The newer models are so much more efficient than the older ones. It is always nice to hear about your food adventures as well as the changes your are making in your apartment. Thank you for sharing.
Goldens, I don't understand why your palliative care team won't help manage your non-cancer pain. I thought they helped improve your QOL, as Candy said, You other pains are harder to manage while you are suffering from other discomfort.
I am in lots of pockets as you have scans, tests, treatments and appointments this week.
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I give up with this new format. Sheesh. Not sure what's up with my profile picture but it won't let me change it or remove it.
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sfcakes~I am very sorry for your loss. I hope your family will bond together and remember good times spent as a family. Nothing is easy.
Mae~Was so hoping for stable. But you do always have an amazing attitude and drive, I hope there is an easy solution. Sending you hugs.
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Emac I received the following message from BCO.organic via email a couple of hours ago. It explains why you can’t load ne avatar.
We recently became aware of a potential issue related to images uploaded by community members to the Breastcancer.org website. While we continue to look into the potential issue, we temporarily disabled member uploaded images.
Including:- Avatar images in member profiles and community discussion forums
- Image uploads to public posts and in private messages in the community discussion forums
- Viewing access to previously uploaded images and files
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Mae, Sorry the brain didn’t cooperate as well as the body. As others have said, I hope the tumor board comes up with a good plan and you get the treatment started asap. You’ve rolled with a lot of punches since I’ve been here, and I know you’ll roll with this one too.
Emac, Ten days off sounds pretty good! I guess with a sporadic schedule it may just feel strange, like a vacation you didn’t ask for. You probably got an email from BCO, or will, saying they were having problems with loading pics and have stopped until further notice. Something like that.
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Mae - damn cancer, what a 💩 it can be. So sorry you got crappy news. Hopefully your med team will get things going. Hugs.
sf-cakes - condolences on the loss of your father. I hope your mom can find peace. Hugs to you too
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Mae, I am so sorry to hear about the MRI of the brain results. Doubly in your pocket until you find out exactly what you are dealing with and what is next for you. I know that you have had a lot of trouble it seems with those terrible brain mets. I am happy your body is stable. That at least does not compound the issues. You seem to be taking it in without falling apart which is helpful but i know that more information and actual treatment of anything that has developed will be best. In your pocket if they want WBR as well.
SF Cakes, my condolences to your, your family and friends on the loss of your father. I am glad he was with your mother at the end as she must have provided much comfort to him along with the rest of you.
Well, after being told toilet and lighting was going to be replaced, I stayed home for the day. A light was replaced in the hallway though the motion sensor still only keeps it on 20 secs so that was pointless and no one came to my place. Oh well, got a lot of other stuff done.
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Thanks everyone, it’s so great to have Mel’s living room so full of support and well wishes.
50’sgirl, happy belated birthday 🎉
Spine MRI scheduled for early Friday morning and should be expedited in time for the board review later that day. Even if I have to return soon for some radiation, hopefully I’ll at least we’ll be able to drive out there on Saturday and unload our vehicles.
DH and I decided to treat today’s funk from bad news with fried chicken and root beer floats. I happy to report that this totally works!
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Mae,
I am so sorry to read of your news with the brain mets! My hope is that the tumor board will come up with a feasible plan for treatment. Delighted that the fried chicken and root beer floats worked! I'll keep that in mind.
MoJo
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