My Husband, My Life, My Love, My Family, My Cancer
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Happy dancing for Mae, great news
long may it continue.Kittykat, I want to propose a scheme , like the frequent flyer points, that we get rewarded when we go into hospital. You would be there with a platinum card. I hope you get out of hospital soon with the abcess finally beaten. Tell the home care nurses they have all of us looking over their shoulder when you see them.
Mel, Mara and other loungers have the best day you can.
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Mae - we all jump for joy when there is great news. Thrilled for you!!! And sorry about the side effects which will hopefully be short lived
Pocket duty for anyone in need.
Prayers that election day throughout the country is peaceful. The US senate and governor races in Wisconson have been ugly. Candidates slinging 💩 at one another. Tell me what your platform is - not what's wrong with your opponent.
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Whoop Whoop for Mae's good report.
So sorry Kittykat that you are facing another surgery. My thoughts are with you.
I went to see my MO yesterday (Monday). Scans done then saw MO couple hours later. That is what I always do. This time, the radiologist was busy and didn't read the scan in time for my appointment with the MO. MO looked at images and said that they looked ok, but we need the measurements and final report from radiologist. I am to continue the Lynparza. Then there was confusion about my dose. I needed a refill script and I told them MO said for me to lower dose after my med pause (due to the fevers) and that I am now taking 200mg twice a day. MO told me to go back to 250mg twice a day (previous dose). They seem so busy and distracted. I know I am 1 of many patients, but I am glad I keep up with my own healthcare. If I didn't know my own stuff, I would worry about them keeping up. My fevers=== gone and to let them know if they come back. Period. My weight loss=== eat.
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Candy, hope the dose is tolerable so you can eat and get some energy. I don't like hearing about distracted and if I read it right, dismissive doctors. I don't care how busy they are, each person in front is their focus. In your pocket and sending some hunger and hoping for less or no nausea.
Kitty, may the surgery go quick and you be out of hospital soon. In your pocket.
Mel and anybody needing it, I am in your pocket as well lending support.
Short sleep overnight, maybe 4 hours but I feel pretty good today, just ate breakfast of two eggs, 1/4 cup black beans, a little bit of noodle, 1/8 cup worth beefless ground, sprinkle cheese in pan, steak seasoning and mayo to bind after adding wheat bran. It was good. I must say the eggs are starting to get old for me, will need to eat them different ways. I also discovered what makes a good scraper that does not scratch my frypan when I need to scrape eggs that stick, I use an old credit card instead of buying a new plastic scraper. Works pretty well and if it breaks, I can shred it instead.
Still planning to do my steps, indoor as I prefer, marching most likely with side to side steps and lifting legs to strengthen core, 10 mins at a time, to music. Goal is still 10000, got 6500 yesterday so I want at least equal or higher than that. Laundry, mobile games for cash and housecleaning fit in there somehow.
Hope everyone has a decent day.
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Yesterday my MO told me that he is retiring at the end of the year. My eyes filled with tears and my voice broke up when. I spoke. Other than second opinions, he is the only MO I have seen since dx 7 1/2 years ago. I am happy for him. We had a nice conversation and he gave me a big hug. I will see him again next week, but not many appts left with him.
Mae. What great news about your scans. I hope you are celebrating. Woohoo!
Kitty, You are more patient than I am. I suppose you really have no choice. You have to be treated, but geez, they need to get it right.
Candy, I don’t understand why your records don’t reflect the fact that your dosage was reduced. One cycle certainly doesn’t seem like enough to know if it is making a difference. The whole thing seems so frustrating. I hope everything gets straightened out.
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Mae, I'm so happy for your good scan results.
Kittykat, I hope you get sprung soon! It can be hard watching everyone else eat when you're NPO and waiting for surgery or a procedure. I'm glad you can go-with-the-flow, although that's easier said than done.
Mara, I get accidentally staying up to late playing a mobile game! It must have been fun.
Candy, your doctors' advice is SO "helpful" re: the fevers and weight loss. Sheesh. I was listening to a podcast last night where the guest was saying how her medical team would basically try to give her another pill without trying to figure out why she was having issues. Sometimes I feel like Dr. Google is our best option (not really, but you know what I mean.)
50sgirl, I'm sorry you're losing your MO. Both my MO and my PCP retired around the same time. I'm happy with my new doctors, but I don't like change.
I'm trying to write my comments into Word and then copy and paste them into the reply section here. I'm sorry if I've mixed up anyone's comments.
Waving hi to everyone in the mel's living room. My breadmaking is going a little too well. Anyone need a loaf of artisan bread? My DH can't keep up!
Carol
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Mara- More "distracted" than "dismissive". I think. The waiting room was full-- for the doctors (multiple in that office) and for the scanning area too.
50'sgirl- I use the patient portal messaging system, a lot. I did tell the MO that she could pull up the messages between me and the nurses and she would see the dates of when #1 stopped the Lynparza and #2 when I restarted it at the lower dose. I don't know if with the computer system there are areas for #1 the doctor's office notes, #2 the messages with the patient and nurses, etc etc. Maybe it doesn't flow well when referring back to it. Glad I am knowledgeable and with it enough to repeat the whole story to them.
Sunshine- I know, right. "let me know if the fevers return", duh. And weight loss advise to eat. I know that.
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Candy, you are one patient, strong person. I would be raging if I was treated like you have been by that doctor. Well done for being your own advocate , but it should not be necessary
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Denny- I find it is necessary. Not just with this doctor, but with everything in Healthcare. I worry about the elderly person that does not know about healthcare, or is intimidated with the system. And I worry about when I get sick enough not to be able to keep everything straight. To rely on the doctors and nurses to keep it all straight is very scary.
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50's, I'm sorry your MO is retiring, hopefully the new one is as good as your old one.
Candy, you are more tolerant than I am. I would likely have commented the advice is obvious and I would if I could. Still glad fevers are gone for you as well.
Well, was messaging my friend today and we realized both our birthdays are coming up soon, she asked if I want to go axe throwing. I said sure so I will be axe throwing on Saturday. It will be a new experience for me and I will probably suck but so long as I do not drop it on my foot, I should be fine. Joking of course.
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Nice day here today, doing more indoor walking, mobile games and surveys for cash, laundry and messaging my friend, we are looking forward to saturday and the axe throwing. Breaking down and getting some recycling ready to put out tonight since it follows the city schedule. Will be nice to empty my closet temporarily/
I made almost a soup as I put some canned turkey, boatload of spinach and corn in my chopper and pulsed it down, put in my fry pan, added chicken, steak and some salt with a sprinkle of shred cheese along with wheat bran and a spoonful of sour cream. I suppose this stuff could also be used to put in pasta or even rice as well, really did not mind it at all.
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Mara- how fun and different that sounds to go axe throwing . Just tell everyone to stand back!
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lol at living.
Go Mara. Mara may very well be one of the most interesting people I’ve ever come across. Let us know how it goes. !!!
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Hello lo to all. I have missed a ton of updates on here and had to work my way through about 18 pages worth of posts so I will wave a collective hello and warm greetings to all of you. I went up to Portland to see my best friend and her family over Halloween and then came back and went right back to my work schedule. I came home from Portland with a head cold so that is slowing me a bit. Things on my end are going well. Prior to my leaving I had talked to my PCP and MO about trialing a very low dose Dexamethasone to see if it would help my pain and fatigue level. I did 1 mg morning and 1/2 mg at night. What a world of difference! I seem to have avoided the steroid crazies and at the same time have had minimal pain. I went from questioning whether or not I had the wherewithal to keep going on treatments to feeling almost normal again. I sent my MO a follow up message through the portal saying it felt like someone had turned on the lights and opened the door. My PCP agreed to extend this one more week and so I have about 5 days left of 1/2 mg morning and night before I stop it all. I know I can't live on steroids but I'm hoping it's enough of a clue to maybe find something that I can stay on that allows me a little more quality of life because this has been great.
I am sorry to hear of those struggling. I have been thinking of you all. Mel, you and your family have been in my thoughts and KittyKat and Candy I am so sorry to hear you both have had such a rough go. There are so many others I have missed but know that I read through the posts and am thinking of you.
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Mel, I will definitely let you guys know how it goes, still watching youtube. Figure I will use a two hand technique and I think that I am supposed to release almost at eye level, even if I don't hit the board, it is still fun to go.
Emac, even though it is limited time, glad the low dose steroids are helping symptoms and hopefully you do get to keep the extra energy and less pain for longer.
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Goldens - isn't that the truth? Im a WI-registered voter but we only vote in the presidential elections. Ive pretty much sat out paying attention to the midterms because I can only deal with one basket case political situation at a time. Everyone at work wants to know my opinion and its like well... dunno?!
Emac - Im glad you found at least SOMETHING to turn the lights back on
even if for a short while. Its like a holiday to normal world! Nurses voted to strike here (first time in 100+ years) so this ought to be interesting. I think its on a hospital by hospital vote basis which may not necessarily impact my hospital/surgery in December. Guess ill find out on Monday when I have monthly with MO.
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Hi everyone. We are back from our travels, and I've been reading along thinking I'll have the energy to catch up this afternoon, then tomorrow morning, the just "tomorrow" and I don't seem to be getting there. So, sending special thoughts to those struggling with physical or emotional burdens - this week and last. Waving hello to the rest of us plodding along. Welcome, Nicole!
Our trip was fun, although it turned out many of our Florida friends were traveling also, so we didn't get to see everyone we hoped. We did have fun at casinos on the way there and back and I learned a new card game I like. On our way home, we made a lucky decision to stop overnight and missed driving through the tornado outbreak in Texas quite by accident. We saw some heavy damage the next day and I was so thankful we had stopped. Then, after nearly 2,000 miles of driving, and a mere 10 miles from home - at two in the afternoon - we hit a deer.
We weren't hurt, and the car was still drivable and is in the shop for repairs. It was just one more long day of running around, already feeling tired after a long trip. More appointments for DH, and I think we finally get a day off tomorrow. Hurray!Hugs to everyone.
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SeeQ ~ thank goodness no one was hurt. ! Good to see you safe!
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SeeQ, glad you were not hurt as well but glad you had a good time on your trip, that is great.
Well, I am busy Friday and Saturday night, that is different for me. Birthday dinner with DB and SIL, they want to take me out and on Saturday I have the axe throwing. I don't mind being busy every once in a while. Feeling happy right now.
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Mara-Glad you are going to have a busy weekend celebrating your birthday!!! You deserve it. We'll all be interested in hearing about the axe throwing! We with terminal cancer really can appreciate the gift it is to celebrate another year on this planet. Here's to many more for you!
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I agree Chicagoan another year! Mara, Soak it up. Happy Birthday to you. You throw that axe. I'm smiling knowing you're happy ! Liking the plans. Enjoy every second. Hugs to you sweet women.
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Mara, Axe throwing! How fun is that?! It sounds like you have fun weekend plans with you friends and DB, enjoy and happy birthday to you!
When I moved, I didn't bring my Christmas tree, thinking I would order a smaller one for here. Instead, I'm getting a slightly taller, but slimmer tree and it should arrive tomorrow. I'm so excited. I'm not waiting to put it up. One, I have to make sure it's okay, and two, we leave after Thanksgiving for our cruise, and three, I'm just excited! I may have to wait to decorate it, though. We'll see.
Friday, my daughter is coming up, then Saturday we're all driving to Oklahoma for my husband's and stepdaughter birthday (same day!) celebration.
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Thank you for the birthday wishes, I am happy as well. Looking forward to it and I will talk about the axe throwing for sure.
Seeq, enjoy the cruise, Thanksgiving, decorating the tree and the birthday as well. Happy birthday to your DH and stepdaughter as well.
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Have a wonderful time on the weekend Mara and enjoy your axe throwing and birthday celebrations with your db and friend. seeq enjoy the cruise and birthday celebration for dh and step daughter. Well, I'm home again, hopefully for good this time. Fingers crossed 🤞
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Mara - what a fun time for sure! Happy Birthday and MANY, MANY more! Ax throwing has become popular and there are several places around us that offer it. I know a lot of offices will have their staff participate as a bonding type experience. I can’t remember which doctor’s office (I have sooo many🙄) but the PA shared that her office had gone and had a great time. Can’t wait to read about your experience.
Kitty - glad you are home - hopefully for good!
I can’t believe Thanksgiving is in 2 weeks.Happy Thursday friends
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Good morning all
Mara axe throwing sounds like fun. Enjoy all the festivities you have planned
Kitty I hope you get things sorted out and get home soon.
Happy travels to those on the go.
Just a rainy Thursday here in Tampa. This Nicole storm has closed all schools here and a few businesses so it feels like the weekend.
Take care all
Tany
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Kitty and Goldens, thank you for the birthday wishes. I have not done anything for a couple of years now so it is nice to celebrate it.
Kitty, I am so glad you are out of hospital, in your pocket you stay at home and it all heals up the way it should.
Goldens, I will be happy to get one to stick in the wall, that would be good for me. Practiced the two arm technique at home and hopefully it works out.
Not doing much today. Laundry, dishes I soaked overnight, lazy man's way of doing dishes, and vacuuming, love the new little bissell. May invest in a cordless one later on though the cord is not too big a hassle. I am unsure what I want to do. May have breakfast and go to the grocery and dollar store for the outdoor walk, warm and sunny which will be nice. Will also be pulling out more winter stuff as the temperature is forecast to drop soon. It's been a quiet week as no work has happened at the building all week. I appreciate the lack of noise, resisting my urge to take an old bissell out to clean it up or my vileda broom that also collects dust. We will see.
I am also happy because I have been able to skip garbage this week meaning I am getting better at using everything or finding another purpose for stuff which is great. I use old vinegar bottles to hold foaming soap mix and recycle the remainder, no space for more than 3 bottles of soap. I reuse Tostitos containers to store different items or foods, I keep the little containers of oxy to hold non food items as well as organizers for other things. I have, feeling better about not throwing out so much stuff and being able to reuse as well. I also don't recycle until the blue bag in the front closet is full.
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Happy birthday Mara 🎉🎉🎉
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Mara, Happy birthday. The axe throwing should be lots of fun. I hope you enjoy your special day.
Kitty, I am glad you are home again. We all hope you don’t return to the hospital.
Tanya, You certainly have had more than your share of rain lately. That storm is expected to travel up the entire east coast.
Lynne
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Happy birthday, mara! The ax throwing sounds like fun! Someone else was talking about ice skating or roller skating. Hmmm... How about ax throwing while roller skating? Hey, we could make that an Olympic event. Sorry, I'm feeling a bit punchy this morning.
Waving "hi" to the rest of the gang.
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