My Husband, My Life, My Love, My Family, My Cancer
Comments
-
I should have wandered into mel's living room last night. Went to bed at 10:00 (trying to stay on a schedule) but couldn't fall asleep. I finally got up at 1:00 AM went out to our den and worked on a baby blanket while listening to an Intermittent Fasting Podcast. Went back to bed at around 2:00 and think I finally fell asleep around 2:30. Got up at around 8:45 or so. Feeling groggy and overall blah.
Decided to go get my labs yesterday. We needed to pick up our computer from Geek Squad and the lab is close by. They're open until 7:00 PM and I figured it would save me a trip today or tomorrow. First time a blood draw has hurt like that. I think he kept the needle shoved in the whole time and it hurt for several hours after that. Not fun. I think I'll stick to my usual morning draws.
First results are back with tumor markers still climbing a bit, but still within the normal range. DH is worried about my coughing. I think I'll message the pulmonologist this morning and ask him what he thinks. He was really good when I saw him before. He took a lot of time with me showing me the scans and the areas of concern on the first scan (recent COVID) and then how the spots had cleared. Waiting on CBC and CMP results.
Not much else going on. I need to work on my blog but am having a hard time getting motivated.
Hope everyone has a decent Thursday…
Carol
0 -
Hi everyone. Hope this day is a good day for all you wonderful ladies. Those in and around the fires, I hope you can stay inside today. Your lungs will sure appreciate it. The contractor down the street had been burning left over vegetation from clearing of a lot. It's windy today and high fire alert since we haven't had rain in awhile, so no burn today.
sunshine99, I see you have a good feel on your pulmonologist. Hope that you receive reassuring news. I met one in the hospital . She was a new associate for an established practice. I set an appt. with her office a few weeks later. When I got to the office, it was a NP and she pushed for a sleep study test. The MD doesn't even visit that office. It felt like bait and switch and I had to stand my ground on NO to a sleep study. I wanted info on pleural effusion and tumor in plura and what else did the pet scan show about my lungs, as I was a newbie. I do have another appt. and if I'm dissatisfied again, I'll discontinue going. DH did a sleep study at a different office and they pushed for a CPAP machine, which he bought, hated it and stopped using it. Lost $$.
When I had my first MO visit he prescribed Kisquali. Humana Medicare Advantage Gold HMO would not allow it, so Ibrance it is. I posted on the Kisquali thread asking what insurance covered that drug. I thought I'd cross post here if anyone has an opinion on that drug, pros and cons and of course, good ole insurance problems.
Sadiesservent and Golden, thinking of you and sending healing wishes for you. My thoughts for all the wonderful posters here at Mel's.
0 -
Irishlove,
Tanya, Micmel and I are still on Ibrance. I think Micmel and I have been on for over 6 1/2 years with no progression. I don't know Tanya's length but it's also pretty long. Candy got at least 4 years. I find the side effects of Ibrance very manageable. At this point for me, there are basically none. It sounds like the side effects of Kisquali are a little more challenging so if you can't switch, it may be all for the best. I know I am a big Ibrance cheerleader but it has been a fantastic drug for me.
0 -
Apparently, insomnia was the name of the game last night! Let’s hope tonight is better.
Irishlove - It just seems so incredibly unfair that your spouse is having health issues too. 😞
Mara - Thanks for the tips. After a couple of hours of being up, I found myself getting ticked off which certainly isn’t going to help the matter. I could have really used your relaxation techniques last night. I got up at 1:30 and didn’t fall asleep again until 5:30. Alarm went off at 6:30. You can only do that so many nights in a row. I’m going to try a different strategy with my steroid. One doctor said some of his patients are successful with taking it before bed as it can take hours for the wired feeling to hit. This may allow me some hours of sleep. It’s worth a try.
It hasn’t rained by me in Florida for many months…maybe last December? Anyway, last night we got 2 glorious inches of much needed rain. Now that the rainy season seal has been broken, we should be getting regular rain.
One scan down, one to go. Keep your fingers crossed that something posts in my portal tomorrow so that I don’t have to wait until Monday. Inquiring minds want to know - NOW.
0 -
I hope everyone’s insomnia is resolving. I have the opposite issue from the pain medication for my broken rib. Can’t stay awake. Missed zip lining today, my partner went without me.
0 -
Hello everyone just thinking about you all and wanted to check in. Hadn’t seen Mae in a little. Hope all is good. Goldens. Hope you’re ok as well. Kitty you too. Sunshine I know we all struggle. But sometimes people just don’t help what we have to deal with along any. My dd knows that my DH and I go to bed at 900 . Between my medicine and his getting up early. We’re tired. I tell her every time she wants to have her new man over. Keep it down for us please. Today it’s 924 we are heading upstairs and there she goes downstairs to start to eat. Knowing we’re already up later than usual. Just irks me when people are just plain clueless. Felt like kicking her in the shin. DH needs to rest. He’s getting older and works early in the morning. He’s up by 540 every morning. Somedays earlier. . That’s why it’s hard to have them come home again. Because you get used to your house the way you like it. I would never have her anywhere else. But just wake up woman!!!!
0 -
@micmel Im here. Not much going on, just random stuff. Took one of the pups to the vet, he has an abrasion on his eye but is taking the drops well and getting better. I’ve finally got all my veggies sprouted, now to keep them alive long enough to give me produce. There’s also a Raven (we named him Edgar) that comes around to eat cat food, I leave for him. Yesterday he left us a nugget of undigested food on the deck railing. Not sure what yo make of it, compliment or insult? I had no idea birds even puked up pellets of stuff, weird.
0 -
Sounds like sleep disturbance is the theme. I had my injections and labs this morning and came home to get a quick lunch with plans to nap for about 30 minutes and then go to Home Depot. I ended up sleeping for 4.5 hours! I am in hopes I can sleep tonight after all of that. I usually do just fine with Xgeva/Faslodex but every now and again it just crashes me like that.
Here's hoping that everyone gets better sleep tonight.
Mae - Eww, interesting gift. I'm not sure if that's an insult or a compliment either. LOL. Animals are sure funny.
0 -
had chemo today so am on a steroid high currently and probably won’t sleep tonight. Am going to try to sleep just know that I haven’t had good luck with the other 6 treatments.
In the meantime, I have some simple, quiet tasks I can do so as not to wake up DH. And hope sleep finds me at some point.
0 -
dodgersgirl - when I was in AC+T for early stage, rather then wait for me to complain about not sleeping from the steroids, my MO immediately started me on a nightly Lorazapam. I knew it helped me tremendously as I got the best sleep in years despite the steroids. Looking back, I’m so glad that I had a doctor who knew the importance of sleep and took a proactive stance. I know if I ask for it at my next appointment, my MO will prescribe it but now that I’m in the game until the bitter end, I hesitate to pile on more pills. Does it really matter if I get addicted? I don’t know. All I know is that I went 36 hours between steroid pills today and the last 2 hours were awful. I don’t know if it was rebound pain that was worse then before or if I had just gotten the sweet taste of having no pain for a month and can’t bare the thought of constant pain of some sort again. Maybe a little of both. I’m going to try to fall back asleep now. Not feeling wired, pain is gone, feeling sleepy but just keep waking up about every 30 minutes. Then the dog started barking and really woke me up. Going to try some relaxation techniques now.
0 -
AJ - so sorry that your broken rib has you missing out. Is the pain any better?
1 -
AJ
OMG, a chocolate farm? I'm having visions of beautiful trees blooming with Cadbury eggs and rows of shrubs - each row with a different type of Cadbury bar. Hope you buy lots of samples
Irishlove,
I responded to your post on the Kisqali thread. I had brutal SEs originally and had my dose lowered to 400mg. After three months of the lowered dose, I am tolerating it well. Chicagoan mentions that several members here have had success on Ibrance for 4 years or more, but I haven't seen anyone post about similar success with Kisqali and that concerns me. I feel as though MOs make choices for us based on their personal feelings about a particular drug, and not necessarily on the science and that scares me.
Sunshine99, dodgersgirl, emac, rk2020 and everyone else with sleep issues I sympathize. Had steroids for 6 weeks last year to counteract the effects of radiation to the clivus bone in my skull and slept 2-3 hours a night for 6 weeks. As the radiation caused double vision and balance issues, I couldn't read, knit or exercise.
Sunshine99
Do you read the MDK newsletter? Fascinating article on how the bi-lateral stimulation of knitting distracts our brain from the section that produces anxiety.
Peaceful day and a sleep filled night to all.
0 -
@rk2020- thanks for the info. I have to continue the steroids twice a day through Sunday. Usually the night of treatment is the worst. Legs and arms get restless. Maybe that’s strictly from the Benadryl given as a premed? I expect to sleep more hours tonight, if my pattern follows the last 6 treatments.
This morning I feel more nauseous than last treatment so will be more aware of keeping something in my tummy every few hours as that has always help me with any chemo.0 -
I’ve just been lurking lately. Recovery is coming along. Only issue now is severe fatigue. No GI issues except I get full quickly. I’m trying to use this opportunity to lose weight. I appreciate all the support here. Have my CT scan today. Way overdue. My original 3 month scan was well over a month ago but it was at a free standing clinic and the tech was unable to access a vein. Moral of the story - I can only have CTs in a hospital setting. So sorry to read about all the struggles here. All the challenges we face never get easier. Like some of you, I have lost the ability to travel and along with it the desire. When you just don’t feel well, the comfort of home is the best. 🤗🤗🤗🤗 to all. Hope today will find all of you in a good place.
1 -
Love to all out there and pockets for anyone who needs or wants me. I do hope everyone's issue quiet down for our dear people, I think everyone could use some relief from that.
I did sleep and was talking in my sleep as I was waking. Dreaming about being at DB, being late for first day university and my old boss from previous job showing up and taking me to school as I was asleep from cancer effects. They helped me get registered and in class and gave me part time accounting work. Then I woke fully.
Today I am planning bit of housework, marching instead of walking, too hot outside, will be close to 100 I think. My internet still crapping out on you tube and an app to earn money watching videos, decided to open up the browser on my firetv and run from there, see what that does, I don't find it drops out from the browser, if it works, that would be good. My other chores will be done, PT lady coming over, not until later this afternoon. Going to work on my moneymaking stuff in between bits of housework and laundry. Foodwise, will make combos of eggs, ground hot dog, cheese and beans, probably separate and microwave beans, make a quasi pancake with mix and eggs with cheese, separate ground beans, hot do mixture, not too big and maybe put butter and syrup on top. Not sure what seasoning may be used. Almost wanted to toss eggs but I must find ways to hide them in more nutritioous stuff I like.
Edited to add, that mix of an egg in pancake mix instead of water and the maple bacon seasoning was good. Once that was made, the chopped up 1/4 cup beans, cheese and wheat bran came together with 60 seconds in microwave, added the small pancake/egg cooked in sandwich maker and full plate was drizzled in maple syrup, was pretty good to my taste so that recipe can stay.
Have already done a Paul Eugene, pulled out ancient tablet to play it on so that was good to have.
0 -
Good Morning to you all! ☀️
I come here to read and not post sometimes just to see how everyone is doing. I know the struggles that go with MBC, and my heart feels for each one of you as I read. I hope your day today is a good day for us all and everyone feels well, and peaceful joy and comfort to those of you dealing with scan anxiety, side effects, guilt, or just plain down.
I’ll drop in later, guys. 💗
💕BARB
0 -
Mae~that looks nasty! Lol but I would think it was a compliment. Pretty awesome you named him Edgar. I pretty much name everything as well, even my van has a name. I’d like to sit and watch the mountains. Pretty awesome. Although, the gift has got to go . Glad the pup is ok. Good to see you
0 -
Good morning, all,
I think I slept better last night. My Fitbit gave me a score of 81 and said I slept from 10:49 until 6:29. I'll take it. My coughing woke me up.
Bloodwork results posted in my patient portal today. Neutrophils are pretty good for me. Still low, but not super low. BUN and creatine at the upper limits of normal which is new for me. I have an appointment scheduled with the pulmonologist for the end of June but I'm on the waitlist for an earlier appointment.
I have chicken tortilla soup in the slow cooker. Tortilla strips don't go in until serving time, but it's a really good recipe. Not much else going on. Will ride the Peloton for a while this morning. Nothing too strenuous and I don't use the "trainer" option - just the "virtual scenic bike rides" available on YouTube. This bike is super quiet, and I can ride it while DH is on a work call.
Waving hi to everyone. Aj, I hope you continue to heal. I hadn't read that article on knitting, but it's a good distraction for me when waiting for appointments, etc. I don't do anything too complicated unless I'm home alone with no one to interrupt my counting stitches. Kitchen scrubbies, washcloths and baby blankets are my project of choice right now.
Carol
0 -
@eleanora I started crocheting a few months ago and have really been able to manage my anxiety/frustration much better when Im working on something. I dont spend hours a day on it, but 20 mins here or there works well to focus on something repetitive and colorful (ive got a blanket on the go).
@rk2020 man a little bit of lorazepam is amazing. I had that prescribed back when I had my back disk prolapse and oh it was fabulous. Just took the edge off everything.
Sleep is the opposite story here - it doesn't get dark really until 930 or so and then light is up at 445. Last few days Ive been so tired by 730 or 8, watch something and then fall asleep at about 930. Slept really hard for 4 hours last night and then was restless until 5 am. With the hip issue its hard to roll over and its better if Ive got my hip flexors out flat and not bent so that means laying on my back only for the most part. Foam rolling, stretching, some light exercises, and changing from seated to standing every 30 minutes or so really started to make a difference last few days and I should be ready for the pool again next Tuesday.
0 -
Sunshine-Would you post your chicken tortilla soup recipe?
0 -
Sending good vibes to those who are dealing with steroids. I remember that from chemo. Lorazepam was a lifesaver. Recommend
0 -
I’ll update everyone about my trip to the chocolate farm.
0 -
Sunshine,
You say “Bloodwork results posted in my patient portal today. Neutrophils are pretty good for me. Still low, but not super low. BUN and creatine at the upper limits of normal which is new for me. ” and noticed that you are on Ibrance.
I am also on a CDK4/6 inhibitor (Verzenio) and also have elevated BUN and creatinine. This, I have been told is from the Verzenio and although it is high it is reversible when one goes off the drug. My onc has informed my GP that there is no reduction in overall kidney function that he or I need to worry about. Hope she is right.
Please keep us posted on anything you find out about your elevated BUN and creatinine.
Hope you can get an earlier appointment with you pulmonologist so that you can get answers and can stop worrying about your cough.
0 -
Had my last PT appointment apparently, gave me some more balance exercises. Apparently my balance is really good according to her. This one had the feet in various positions and when I loose balance, grab the counter. I will definitely keep these up and she said if I fall, get up on knees and push out if nothing to grab so that is what I would do. I will miss her, such a lovely bubbly person who loves my cat.
0 -
The chocolate farm was great. Lots of samples and education about chocolate production. It’s a little operation, everything done by hand. I’m still in pain from my broken rib and the oxycodone is making me constipated. So doctor says to take a laxative. So then I have diarrhea. Then, of course, there’s the side effects from Verzenio and Letrazole. Not how I visualized my vacation.
0 -
@AJ The side effects of these drugs can be maddening but I’m glad you made it to the farm.
I tried taking a half steroid pill before bed. Woke up after only 45 minutes 😞 but I wasn’t wired so I took a melatonin and praise God I slept for 6 hours! Six hours! I’m going to take the other half this morning and hopefully that is enough to help with the pain. 🤞🏻I’m incredibly relieved to get some sleep. I hope I can do it again tonight.I had scans Thursday/Friday but results haven’t posted yet. I guess I just have to be patient.
0 -
Sondraf
Yes! I have exactly the same soothing effect from knitting. I usually have more than one project going - a more complicated pattern for when I feel up to it, and a simple pattern for when I just want the comfort of the process. If you haven't discovered Ravelry, I highly recommend it. Lots of beautiful patterns, many free, often with comments by those who have used the pattern.
AJ
So glad you enjoyed the chocolate farm. For me, chocolate is a laxative, so I occasionally prescribe some for myself.
Hope everyone has a restful weekend
1 -
For those dealing with poor sleep, sending zzzzzzzz's your way hoping you can stop taking drugs causing the wakefulness.
Goldens, Living, Mel, anyone who needs some pocket duty, hopping in for duty.
Not sure what I am doing today. Probably some outdoor walking, it is warm but I broke out shorts, come just above knee but don't care. Laundry, housework and survey/games for some cash are order of the day. Pulled out beefless ground from freezer, can use that for different things, probably have beans and hashbrown first and find something for my onion rings from the store.
PT person is done now, left some good exercises to strengthen me to avoid falls, she said if I have to get up, practice pushing off from ground. Says I actually have good balance which surprised me but that was nice to hear. Take care this weekend.
1 -
Here is a link to the soup recipe. The author is Robyn Conley Downs. I did take out some of the soup (minus the chicken) and blend it to make it thicker.
Goingtobeatthis, thank you. I’ll let you know what my MO says on Monday. I find it interesting that my BUN has always been within a certain range and now it’s suddenly up 15 points. I’m glad I have my swallowing eval before I see the pulmonologist. Maybe the lung thing is related to the swallowing thing.
Aj, I’m glad you enjoyed the chocolate farm. I’m sorry you’re dealing with “digestive” issues.
Just heard from a former classmate via social media that she now has Leptomeningeal spread of her Stage IV breast cancer. That totally sucks! My heart hurts for her, her husband, and their son.
https://www.bing.com/ck/a?!&&p=9602ef9bb38bd369JmltdHM9MTY4NTc1MDQwMCZpZ3VpZD0yNTNlZDNkZS02NzRjLTZiNGYtM2FiYi1jMmIzNjYyNjZhNDAmaW5zaWQ9NTIyNA&ptn=3&hsh=3&fclid=253ed3de-674c-6b4f-3abb-c2b366266a40&psq=Robyn+Conley+downs+chicken+tortilla+soup&u=a1aHR0cHM6Ly9yZWFsZm9vZHdob2xlbGlmZS5jb20vcmVjaXBlcy9jcm9ja3BvdC10b3J0aWxsYS1zb3VwLw&ntb=1
0
