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

candy-678

dutchiris-

Sondra- Happy for the uneventful scan for ya.

mara51506

Glad your MRI was uneventful as well Sondra.

mara51506

Glad to hear about your good scan Sondra, enjoy Tulsa when you go.

mara51506

Good morning, afternoon or evening depending on your time zones.

SeeQ

Candy - in your pocket tomorrow for scan results. I love your Sunday list, please don't stop - you pull it all together! Add me for scans tomorrow. Results next week, because I have family coming to visit this week.

Sondra - my incoming visitors are from near Tulsa, so I'll try to remember to ask them about must-see spots there. That was a nice surprise from your OH.

candy-678

Ok ladies here goes:

SeeQ- PET Monday

Aprilgirl (Ibrance Thread)- MO for scan results Monday

Lee- Scans Monday

Snow-drop (Ibrance Thread)- scan and MO Monday

Me (Candy)- MO for scan results Monday

emac- MO Tuesday

Sunshine-- Scans Tuesday

Lee- MO for scan results Tuesday

mae- CT and bone scan Tuesday

moth- Scan results Wednesday

Katrose (Ibrance Thread)- PET this week??

Grannex (Liver Thread)- Scans this week??

Lots of pocket duty. Prayers for all of us. I am so glad we are here for each other.

******Edited to say----

I know that this list is not complete. There are lots of Stage 4 ladies, and men, on BCO. I am sure I have missed some that have scans and MO appts this upcoming week. Also, I want to remember those that are continuing on with treatments this week--- maybe not scanning, but just plodding along on their treatment plan. Going to chemo appointments, taking the pills, managing the side effects. Also... thinking of those that have chosen to stop treatment and let nature take its course. The honesty and strength those ladies are showing to all of us. Walking the path we all will walk at some point. I do not want to exclude anyone with my "pocket duty" list. All of us MBCers are important.

illimae

Candy, you’re effort and dedication is incredible and very much appreciated. I hadn’t realized what a busy week it’s going to be but I’ve got a big bag of starbursts, so I can hop from pocket to pocket.

Wishing everyone a low/no stress weekend.

Sunshine99

A big thank you to all doing pocket duty. I have scans on Tuesday.

I also got my second shingles vaccine on Friday, and it really knocked me down for a bit. Sore arm (to be expected), but the body aches and fever were not so fun. I'm supposed to call my MO if I have a fever over 100.4 but I didn't call her. It was Friday night, and even when it got to 101.2, it was still manageable. Saturday morning, I got up, took a shower, and then crashed on the couch. pretty much for the rest of the day.

Feeling better this morning and temp is normal so yay for that. The pharmacist did say that this second dose of the vaccine could hit me harder than the first one, so it was nice not to be really worried. I know that at least one of you has been hospitalized with febrile neutropenia, but I figured I was safe waiting a day to see if my temp went back down. I'm glad I didn't have any plans. Nice to be able to sleep and work on some knitting projects.

Happy Sunday, everyone!

candy-678

Sunshine- You are now on the "list". I had a strong reaction to my 2nd Covid vaccine (got it in February). Temp 102 with body aches for 36 hours. I did not call my MO as I thought it was expected. I think that reaction after a vaccine is expected. Glad you are doing better now.

KBL

Hi, everyone. I wanted to ask a question. I am turning 60 this Friday. I am going to have a quiet dinner with my husband, daughter, her husband, and my grandson. I got to thinking today that instead of me getting gifts, which I make sure no one does because I truly love to give to them more than receive, I want to do something special for them. I have no idea what. I only have a few days, as I didn’t think of this idea until today. My husband is really the only one who truly knows how I feel from day to day. I don’t want what I do to remind them about my cancer but to be happy. I’ll take any ideas. I’m so not good at thinking of what to do, especially for my husband. He really doesn’t need anything either, but I want him to know I appreciate him.

Also, if, by chance, anyone knows of a builder in Murray County, Georgia, who is exceptional, can you private message me. It’s so hard to find a reputable builder. I know that’s a long shot, but maybe I’ll get lucky.

Hugs

Chicagoan

Dear KBL,

Why not give your family the gift of celebrating you on your special day? Gratefully receive the gifts they may choose to give you without trying to direct what they can or cannot give you. They too might feel joy at surprising or spoiling you. You can express your appreciation to them on their birthdays or on another day just because.

Congratulations on making 60! I find that I love being in my sixties-it's been one of the best times of my life.

RosieRed

KBL - How about something you can all go to as a family and enjoy like an outdoor concert or movie at a park? Or treat everyone to a fun family dinner at a restaurant?

illimae

I just heard in the news that the temp reached 116 in Canada, in Canada!!! What?! Sending chill vibes to my hot friends

KBL

Thank you, Chicagoan and RosieRed. So hard to not give and receive instead. Lol. I appreciate both of your suggestions. They are great, and I will look and see what’s going on in my area.

Kittykat9876

I swear that my local hospital thinks I just come here for the free meals and housekeeping, had another high temp today so I'm back again, hopefully they can get it under control sooner rather than later. I hope all went well for Candy today and any one else needing pocket duty, I'll be the one hiding in the corner behind my mask handing out cupcakes.

Micmel

I have to have my second shingles vaccine soon. Now I read there are reactions. Ugh. I had none with the first one. Of course there have to be some with the next one. I have had enough medical vaccine crap!

I've been quiet, get inside my own mind sometimes. Feeling so badly with fatigue, but wanting to feel good so badly at the same time. It's pretty cruel. If you ask me.

Sunshine99

Mel, good luck with your next shot. Hopefully you can schedule it the day before you have nothing planned. I did let my MO know about the temp over the weekend, but also let her know that I was feeling back to normal today.

Rosie24

KBL, Congrats on your soon to be 60th! Chicagoan and RosieRed gave you great ideas. I agree that there is joy in giving for some people, so if your family enjoys that then why not go along with it. My own family has several difficult to buy for people who buy themselves things they need/want and always say they don’t want anything, which makes things not so joyous. If you can think of a nice group activity in your area as RosieRed suggested I think that sounds great. Maybe a boat ride on a lake, train ride or even an afternoon at the zoo if you have one in your area?

Candy, I’m still in your pocket as you meet with MO and make your way home.

Sunshine, pocket duty for your scans tomorrow. I hope you get quick and uninteresting news

moth

hello everyone from the stinking hot PNW. Our external thermometer clocked 42C yesterday and today might be hotter?

I'm fine so long as I lay around doing nothing. We have 2 portable ac units so we can get parts of the house cool. Walked olive early in morning but it was already 27 outside. Crazy.

I should get my scan results on Wed.

Hugs everyone

mara51506

Moth, I see your temperatures out west. Though I sometimes envy the more temporate climate in the summer, I admit, your temps are awful. We have hot and humid weather in London. We are sitting at 28 feeling like 37 with the humidity but that is easing by Wednesday. Our summers are almost always very hot and humid which I dislike but considering I sweat so much, if I have to walk out in it to the hospital or such, I put on my sunhat, bring water and wear my neck fans. Won't stop the sweat but does keep my cheeks from feeling like they are burning. I hope your heat which you are not used to lifts soon.

illimae

Darn it! I totally forgot about the MBC group today but I’ll see anyone joining in next week.

So, I did it, I bought the tickets to Jaws on the Water. It’s July 10th and we’re taking the travel trailer up to stay overnight. I’m super excited to finally do this and will post pics in a couple weeks.

booboo1

Mae,

That sounds SO fun. Yes, please post pics

I am finally starting to feel better and rid myself of the last nasty bout with Abraxane. My trip to Maine is coming up, leaving next weekend, and I am so excited. Can't wait to be with my sister and BIL and several other family members. Then I'm riding home with them and will stay another week. My sister has arranged for a family reunion the following weekend so I can see everyone. I'm very close to my cousins too so I'm looking forward to that too.

Mel, I know this probably isn't an answer for you, but my pulmonologist put me back on steroids to treat my Sarcoidosis, and I suspect that's why I feel so much better. I finally have some energy again and although I can't stay on it forever, it sure is stomping on that fatigue.

All in all, I'm hanging in there and doing much better without treatment. I really don't think my body could have taken much more. For now, I am very happy that I am starting to feel human again, so I'm counting my blessings one day at a time.

Love to all

candy-678

Cross posting with a couple of my go-to Threads----

Ok I am home from my MO appt and want to post while it is fresh in my mind. Though I am very tired from the long day--- travel to the center, lab work, MO appointment, and Xgeva injection.

So the conversation took a turn I was not expecting. 3 months ago, my MO presented my case to the liver tumor board and came back to me that they did not have any recommendations but "watch and wait" for now. So, this time I was thinking systemic treatment change options. I was ready to discuss PARP's or Xeloda due to my biopsy results (biopsy done in April). I had my scans on Friday and had not seen the results before today's appointment. Scans this time show I had 1-3mm changes in all 4 liver mets again this time. So, since last September, there have been small increases of 1-6mm in each tumor each scan. Slow, steady growth. So today my MO starts discussing liver resection or ablation. I said "I thought the liver board did not advise on that". She said she will ask them again. She said that she hates to change me to a PARP yet. That they are hard on the blood counts and that prolonged use of PARP's can cause leukemia. ??!! That she wants to zap these tumors and keep me on Ibrance/Letrozole. That we can use I/L for a long time with minimal side effects, I guess minimal compared to other meds.

So now I am at a loss as to what I should do.

Edited--- The whole ER-/PR+ now on my biopsy---- that is evidently rare. And with the PR still + my MO thinks that the hormone pathway is still a problem and that hormonal therapy may still be working. At least some with the small growth I am having. She said she would be more concerned about moving from hormonals if I develop NEW tumors.

BevJen

Candy,

I think that sounds like a great plan. You need to get comfortable with it, however.

Kittykat9876

At least I have a better view from my window this time and a visitor. Mae, I'm glad you're getting to see Jaws and Booboo I'm pleased to hear that your energy levels are returning.

ShetlandPony

Kittykat, best view from a hospital window ever. I had a summer/fall where I was in the hospital five times in as many months, mostly for unexplained fever. I hated being there, it felt so lonely and frustrating. Opening the blinds and seeing outside is a good thing to do for mental health; I did that too. Once I just called the social worker and asked her to come and see me so I could wail about my predicament for a bit. Posted on BCO, texted people, watched shows on my iPad. I hope you get outa there soon!

runor

It is hot here. So hot. 40 (104F) outside. 30  (86F) inside. No air conditioning. Not cooling off enough at night to cool the house. No sleep. Walking outside is like stepping into a wall of fire. The forest is curling, yellowing, dropping its leaves and it's only just the end of June. We've had no rain. This is not good. Local businesses are shutting down. "Only mad dogs and Englishmen go out in the noonday sun!" said someone once. My garden is not going to survive despite twice daily watering. In 30 years of living in this house it has never reached this temperature inside. Unprecedented. 

Pocket duty for all, but only air conditioned pockets, please!

Pots

hey Mel, waving to you and gals in your living room. I’m a lurker and follow along most days. Thank you candy for posting the scan schedule. My next CT is July 8 btw and yes I’m anxious. I too live in the boiling hot PNW. Today it was too hot to be outside; schools, some stores and restaurants closed. My thermometer read 41C or 105.8 F. My garden is shrivelling even though it gets watered daily. Sigh. Life otherwise is lurching along. Started cycle 24 on Piqray with the Faslodex shots as a chaser. I keep the pharmacy going singlehanded... I’m up to 11 pills to manage SE plus Piqray per day.

DodgersGirl

Micmel, I had my 2nd Shingles shot earlier this year. Only real side effect for me was soreness at injection sight for a day or 2.

Hoping all goes well for you, too.

Trishyla

Wanted to commiserate with all of you struggling with the heat wave in Canada and the PNW. That's what our entire summer was like last year. It can be brutal.

I grew up here in Southern California without air conditioning (too poor). Here are some of the ways we used to keep cool during those long, hot days of August and September.

If you have an ice chest or a bucket or tub, fill it with ice and water. Then drop in hand towels and/or wash cloths. Use these to put on the back of your neck or on top of your head while you sit in front of a fan. As soon as it loses it's cool, replace it with a fresh one from the ice water. Keep it next to your bed and use the cloths on your head, chest and feet.

Take tepid showers and don't dry off. Wet hair and a wet body cool you down quite a lot. Stand in front of a fan naked. May not look great, but it sure feels good.😁 For even more cooling, eat a popsicle at the same time.

To cool your house without air conditioning, keep all shades and curtains closed all day. Also, check to see if you have a whole house fan in your attic. Don't know if that's a thing in cooler climes, but it is here in my neck of the woods. Turn it on at night and open all your windows. It will suck hot air up from the house and replace it with (marginally) cooler air from outside. At night hose your house down. Spray both the roof and the outside walls. Evaporative cooling at it's finest.

Stay safe, everyone. Hunker down and try not to leave your house if you can avoid it. This kind of heat is nothing to take lightly.

Trish