My Husband, My Life, My Love, My Family, My Cancer
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Well, I slept well. Put a light blanket over my head so it would be more humid, less cough. I did call in sick to the Herceptin this week mostly because I did not want to go but wanted to avoid spreading it around. I do not believe it is pneumonia or anything too serious, only been a week or so. Less production from chest, no change in appetite either. The nurse was pretty insistent I go to a walk in but I declined as it is hard for me to get around in the snow.
Lost my box knife cutter, been using scissors BUT decided I want actual knife cutters. Going to play mobile games to lessen the cost. I did get the scissors but accidentally but money in my paypal instead of amazon, duh. Oh well, that is life. My paypal will get 15 bucks so I can send the 5 bucks from paypal plus the 15 back to myself.
Having the leftover KD meal which has extra stuff, add some garlic to the mix, should be good. Not sure about the second meal, likely one of the mini pizzas.
Hope everyone has a good day and in pockets for everyone.
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Hi everyone. Geez it sounds like the winter bug has really been affecting our group. @mara51506 I am so grateful that you are not injured. I'd cancel that paratransit ride too. You know when the medical staff is upset by cancellations, they need to walk a mile in our shoes. Then they will understand. Please take it easy and healTquickly. Don't be so hard on yourself for being unable to get up after your fall. I sure couldn't get up myself.
Been a rough fall into winter for my health. I believe the bacterial pneumonia was from aspirating fluids. I just can't swallow properly when it comes to fluid. Food is ok. Have an appt. with Gastro for this, although I had asked for speech pathologist. Had prior problems years ago with same issue, caused by MS. Then the flu hit and after days of diarrhea and vomiting, I passed out on the bathroom floor. DH called an ambulance. They looked for diverticulitis as that's what I thought the problem was. They gave me IV hydration and said it's the flu, nothing more they could do. Then along comes UTI and pus on my tonsils. So I started cephalexin for 7 days. Cleared UTI but you guys were right, the throat remained sore and I have upper respiratory infection. The nurse said my lungs sounded clear. Now I'm on Amoxo-clavin for 10 days. I also started a colitis flare. It's manageable at this time with diet. The biggest symptom is constipation along with pain along intestinal track. Off Ibrance for 10 days. Hopefully I can get well soon.
Have a question for anyone that has a support program sponsored by your insurance. I signed up for this program and was excited when I found out it's oncology nurses and are available for phone calls on a 12 hr. day. Today I rec'd my goals for 2026 from them. Man did I get angry. One said that I must deal with hydration properly so their will be no more ED visits for IV hydration. I responded that I had the flu for a week and it was an absolute necessity, but I'll try better in 2026. Hmm. Third goal they stated I need to learn to cope better with a serious illness. Now that really peed me off. I wanted to respond and say hey wanna walk a mile in my shoes. I told them I have a therapist to help me. I'm worried they are trying to interfere with that and the medications prescribed by the therapist (she's a physchiatrist). I hate managed care programs!
In pockets for all my sweet friends. Thanks for the pictures and concerns. You gals are the best.
Irishlove
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OMG, My brother came into my bedroom startling me awake, he genuinely thought something happened. I do not keep my phone on overnight so the neurosurgeon office called and then called older brother since yesterday, said he thought I was dead. Got up to learn need to start having scans so CT scan tomorrow then in the coming days will be booked for MRI and consultation. Luckily could get an appointment for CT tomorrow at 4pm and called Paratransit, they are able to take me to that hospital. I don't know my way around that particular hospital but will figure it out. It is too bad hospital called so early because phone is not kept on at night normally. Finally some movement on this brain cyst. Apparently he thought I was dead as he banged on my door for 1/2 an hour. Poor guy. I will leave phone on overnight so can receive calls. Once the brain nonsense is over, will go back to do not disturb and listening to rain or leave phone on and listen to rain anyway.
Not sure about meals today, probably do up some crispy lentils and beef, pulled out a pound of ground beef, if thawed in fridge from last night, will cut in 4 pieces to go with other stuff I make. All sound yummy to me. I still have the KD and riced veggies mix leftovers so they could furnish a mean for me as well and pulled out cheese too. I will see what I decide to have, something in the air fryer for sure. Other than that, burritos would be a quick and really good thing to have.
Laundry going now, My SIL was going to come over to help clean it, told her do not need that to happen as my toilet is clean, just have lots of spray for the toilet bowl to clean it all the time. Oh well.
Hope everyone has a good day, in pockets for all, in own pocket to figure out how to get around a new hospital.
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@mara51506 Can you turn your phone to do not disturb but allow phone calls from your DB and SIL? That's what I do. Only immediate family can still call me after certain times. They can also text although that can be annoying. My DD texted me last night after 10 (she was at work) and I answered it only to read it was about my DGD Advent calendar gift she forgot… oh well.
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I will see, best bet is to leave phone on, until everything is done as the hospital may call so need phone open, I will survive. Don't want people to think I am dead, DB was knocking on my door half an hour and I cannot hear stuff with rain sounds going. Will wait til brain is done before go back to normal.
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I would leave it to just allow brother but unsure how to allow calls from hospital as well. I also have the lifeline people coming so I will see what happens there.
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@irishlove Oh no now the flu, ugh! Im sorry it’s been so rough lately. Ummm and I’m right there pissed with ya😡 really learn how to cope better??? MS and cancer oh yeah no big deal nurses, I’m living the dream… seriously! Continued prayers and healing vibes your way❤️
@mara51506
Oh geez your poor brother! Don’t blame you for not wanting to be disturbed while sleeping as it’s hard enough. Happy to hear your finally getting things started with your brain issue. In your pocket for scan, may you navigate the hospital smoothly❌⭕️5 -
@mara Oh what a fright for your DB. I hope that you can work out your phone. They are so complicated anymore that I sure couldn't figure it out. So pleased there's movement on your scans. Hopeful that you can navigate the hospital and transit. It's hard enough without more obstacles in your way. In your pocket sweet gal.
@cookie54 Thanks for thinking of me. I'm trying not to take it too personal. Alright, now I'm just telling a story. I truly am livid, however they do offer some great services, so I gotta play nice.
Hi sweet ladies. Thinking of everyone in the wee hours of the morning. Woke up thinking it was time to rise and shine. I had fallen asleep early. House is clean, tree is up and looking pretty ('courtesy of SIL and DGD) .
I finally managed to strip beds and get clean linen on. All laundry is caught up. I had an adrenaline rush, where it came from I don't know. But I put it to good use. Now I'm exhausted. It's a brutal 42 here. But compared to my sis in PA, we are 30 degrees warmer. The one dog is a short haired terrier bull/pittie and she shivers when going for her morning walk. I think age has something to do with it. Time for a doggie coat. Pigeon on the other hand, has longer hair (pittie) and is always warm. Good to know if the heat goes out. lol
It would be nice to do a small amount of Christmas shopping with DGD and her Mom. We decided no exchanging this year. Really don't need anything and Just buy for an 11 year old. Wish she'd be excited by money. No such luck. Her dad needs new ball joints and two front tires. We're gonna help but the bill is high, so the rest is on him. We had friends that would adopt a church family that was in need. Every year they picked a family that truly needed dental work. What a great idea. Today dental prices are ridiculously expensive.
Stay warm and don't forget to check your plants next couple days in our area and Georgia. My christmas cactus is blooming. She's a little late, but gorgeous.
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Mara - what a fright for your DB! Here for pocket duty for your scans.
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@cookie54 Until this brain stuff is done, leaving phone on, did take off a couple notifications like the pedometer and the Walmart notification, will put it back once again for next delivery.
Slept most of the night deeply, bout 7 hours. Started coughing this morning but that is fine, need to clear out the chest. I am presently doing some cloths, will need find some warmer leggings to wear and check the walk, see if need to salt it a bit.
Unsure what to eat, should eat well pre hospital appointment today. I called the Paratransit too early but as long as there are chairs I can sit my butt in that is fine and will have earbuds for the regular phone and phone that plays music. I have ground beef that can be cut up and cooked. May cut into four portions or cook it all and split it later, not sure yet.
I hope everyone has a good day and in pockets for all. In own pocket as well since I do not know the hospital, was there as a patient but was always wheeled in a wheelchair except after the last brain surgery when I walked a circle when bored.
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@mara51506 That must have been quite a fright for you to have someone in your room when you were sleeping. Do you leave your front door unlocked? Good luck today at the hospital.
@irishlove Humana kept trying to get me to sign up for their cancer service but I resisted-they must have called me hundreds of time. I just didn't see a need for it and prefer to deal directly with my oncology team rather than getting their "advice." Good for you for getting all the sheets washed and changed. That takes some energy for sure.
Feeling much better now that it's been 9 weeks since my hip surgery. I'm able to stand for 7 hours in the cold so I am feeling pretty good. Still waiting on biopsy/blood test results to see what treatment change I might need. Probably won't know until early January when I have new scans.
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Well, they are moving fast, they did want me for MRI tomorrow at 645 am, I am able to make the app't since DB is coming to get me at 6 am. I will likely stay up overnight then get home and head off to bed or resting on the couch. Once I have a consult, I will have a better idea what is on tap. SIL asked if I would take bug bomb form of chemo, I said no.. Did not bother saying brain won't likely get more chemo but if mine ever changed since there is the blood brain barrier but do not mind radiation.
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Well new hospital trip was OK when dropped off but when called for ride home, was at the wrong zone A so had to call back again. Finally got home now, having mcdonalds or harvey's, really hungry. Also staying up til 5:00 as Db coming to take me to MRI tomorrow for the ungodly 5:45am time.
Once I have the MRI, need to be notified about future consult and SIL wants to go with me for that.
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@mara51506 Glad they are really moving this along. Yikes that's really early, I'm sure you'll come home and crash. In your pocket and sending good vibes your way💕
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It's almost midnight and no sleep yet. Hi cookie, chicagoan and mara and all the fine ladies on this support group. You all are so needed and appreciated.
Mara, in your pocket and hope they are large pockets because their are so many supporting you tomorrow and going forward. Be sure to get as much rest as you can, because I know you'll be exhausted. I'm so glad family will be accompanying you.
Chicagoan, I didn't realize they were substituting themselves for the oncology team. Not keen on that at all. I'll go ahead and accept the service but if they get too pushy, out the door. I talk a lot when I have a captive audience, so that's one way of airing my grievences and that might also temper their phone calls. I don't mind asking for help, but DH really hates people that are all up in your business. Goals are fine, but demands, hmmm, I do believe I am intelligent enough to know when to go to the hospital.
Sore throat is doing better but now colitis flare is kicking in. I wish this stuff was all in my head, but it's real. I think my body is just too worn down and one illness begets another illness. I'm on amoxocillin for upper resp. problems and hopefully the colitis will subside. I'd like to get out of the house for a bit. Maybe pickup another pointsetta and a door wreath. Didn't decorate outside this year. Also some mulch for the gardens and peanuts for squirrels and crows. Then maybe DD and DGD will go along and we could have lunch or dinner. Thinking what to do for Christmas Eve with left overs for Christmas Day for 5 people. I do not want to plan on cooking because I'm just not reliable at this time. Maybe Cracker Barrel or Bob Evans. Would love to do Carrabba's but the meal prices have skyrocketed.
In pockets for all your needs.
Irishlove
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I was startled but DB knows my door code both at front and my apt code. My door is locked all other times.
Got the lifeline on now, all set up for me which is good since they can phone 911 if needed. When feeling less busy with the brain stuff, planning to get to walking in the apartment so less possiblity of a fall. Building has back door open, unsure why but there it is.
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@irishlove I do appreciate the pocket duty. Have to laugh at myself as was dress for a 5.00 pickup from DB but then he said coming at 6am and I remembered. Oh well, that is fine. Of course one of the first patients, we got there before dept was fully open but oh well, made it a bit quicker. I did tell them about my reaction last MRI so the one person injected contrast super slow, I was periodically holding breath and another waved an alcohol swag. Needless to say, no problems or nausea. Got a donut and coke as my sweet tooth was activated.
MRI was good, I like listening to the sounds and then imagined a dj making sounds in another machine. It was a steady thump.
I am on wait for a consult to happen, apprently neurosurgeon going away in Jan so we will see when the consult happens. Must remember to leave my phone available when I go to bed. Shut off some of the notifications from apps but the neurosurgeon calls before I am up usually.
I will be dozing off and on, need some stuff done but could wait until tomorrow.
Thank you all for the pocket duty. I am also in yours. @irishlove sorry you have to be on antibiotics. I have a nagging cough but no fever or shortness of breath, wrote off as a PIA cold and flooding with water and honey to keep throat from irritation. I just don't always enjoy taking cough syrup.
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@mara51506 So glad your scan went well. I thought of you as I lay there struggling to sleep last night. I had to get a new phone yesterday and they had a special on that also gave me a new smart watch free. I added the emergency phone feature for a few dollars a month because of you. I think it is time even though I have not been falling, but the way I have been feeling lately tells me it is time.
@irishlove Thinking of you as you struggle through all of your antibiotics and issues. I am quietly relieved I won't need to cook for Christmas as I also don't feel reliable. I am slowly putting the cooking on my family…it is time.
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I have always loved hosting Christmas, but we are doing something different this year and I'm surprised that, like you, I'm relieved. It will only be my husband and I and my daughter and her family. We will treat everyone to brunch in a nice restaurant and then later in the day order Chinese takeout. No cooking, no stress, kids have time to play with their new things and the adults can relax.
If you have any good Chinese restaurants nearby, the prices are reasonable and the food is usually good. Sorry about the colitis. Have finally healed 90% from a 5 month struggle with colitis and diverticulitis. I'm exhausted and I don't have to deal with MS as you do.
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@eleanora-That sounds like a wonderful plan for Christmas!
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@intolight It's difficult to give control of meal planning to someone else. On a good day, I make use of the crock pot. On a bad, it's Factor food or a lovely gently fried egg with sourdough toast. With your testament attached to your bio., I can feel your deep devotion and love of the Lord. Thank you for sharing and inspiring me and I'm sure, others. We need hope and faith on this journey.
@mara51506 Sure wish that the oncologist would see to it that you are taken care of before they take a leave in Jan. It'll be good to get back into the routine of exercising, in your home safely. Wish I was more inclined to do that.
@eleanora Oh we must have cross posted around the same time. What a terribly long time to heal from colitis and diverticulitis. Having a compromised immune system takes it toll on us. I love the idea of Chinese food for the holidays. Nothing like left overs, so no worry the next day.
DH found a chewable Kaopectate and it did the job. 4 days non-stop and I felt so drained. Made a pot of chicken, broth and boiled white rice and I just couldn't eat any of it. I did get some broth down. Well the 4 others in the family wiped it out tonight. Sure wish they'd learn how to cook to help me out. DH does try some things, and he makes sure I am well taken care of. He's just not a seasoned chef, lol. It sure has been a difficult time since the first of October. Hoping things settle soon so we can have a lovely Christmas. So many viruses and respiratory ailments going around, no wonder I had pneumonia. Ok, on towards better healthy days for all of us.
In pockets for all my sweet friends.
Irishlove
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In need of positive vibes and prayers. DH has a colonoscopy tomorrow after having an abnormal cologuard test. Just cant shake the idea that something is wrong. Thank you.
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Sending them your way now. I know how you feel - this disease has trained us all to expect the negative.
Please keep us posted.
💕
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@goldensrbest I will be praying for you and your DH tomorrow for negative readings on his colonoscopy tomorrow. May God cover you both with His love.
@irishlove Hoping you continue to feel better and can enjoy the holidays. Sounds like we both struggle with loved ones at home who do not cook. My DH can cook some things, but fortunately they are not healthy for me. This morning he cooked sausage without the gravy. I have a PET scan tomorrow and cannot have any carbs today but I fear for my stomach. I told him I wanted eggs this morning and he thought cooking the sausage with it was brilliant as I can have meat today. Ughh! Thankfully the eggs are separate.
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Grrr. Add me to the ailing list. My throat is so sore and swollen that I choked on a potassium pill last night. It hurt enough to make sleep difficult and fitfull. In addition I have had urge incontinence since returning from Laos. I bought more robust pads for night and ended up with a couple of blisters where it rubbed. Worse yet, I can’t see them so DD has been coming over to treat and rebandage. Poor thing she is so busy already and we don’t live close
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checking in on everyone. Got 8 inches of snow. 18degrees. Brrrrrr hate this. Chemo continues for Gabbie. It’s so looong and difficult for her. I just want her to be done. Scares me to think it could come back. Mara glad you’re ok. Sounds like some of you don’t feel too good. I’m thinking of you all and sending hugs Thanksgiving was ok. Two of our clan couldn’t make it. DH ds worked at Hopkins hospital cardiac unit for the overtime. His girlfriend went home. We missed them. DH got the tree up. I didn’t decorate no energy. I’ve had a hard time with new doctors and new medication decisions I would not accept. So I fired one doctor and got another one back. I cried in her arms. “ help me”. I was at my wits end. The pain had me. Luckily she recognized me and was very receptive to helping me with my medicine problems. She fixed things and I cried. Such a relief when you need something. And someone takes away what you need because they want to reinvent the wheel. So I’m settling down from that. I hate cancer. Beyond hate it. I think of you all the time . Tanya, how is the eye? Love to all.
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@goldensrbest In your DH's pocket and yours, too. Prayers for a clear colonoscopy tomorrow. Those cologard tests can give false positives.
@intolight In your pocket and prayers for a good pet scan tomorrow. I had to laugh about your DH cooking sausage as mine does that at least 3 times a week. Not in my meal plan either. LOL
@wren44 I am so sorry this winter bug is visiting you, too. It seems wide spread. I hope you are able to get relief and heal quickly.
@micmel Oh how we all worry about you and Gabby, too. Lots of love and prayers for her to finish her chemo and never look back. Also, glad your doctor is listening to what your needs are, not what the heck they think. Sis and I talked today and it was 16 degrees at her house, minus the wind chill factor. Stay toasty warm sweet lady.
@mara51506 Did not see you post today? Hope you are just getting some extra rest. Sending thoughts and prayers your way.
Today was light a candle for all in need. We always light a candle to welcome the Christ child on Christmas Eve. My Grammy K. taught us this wonderful tradition. My sis still has the candle that Grammy last lit in 1991. Sis lights it for 2 minutes and stands on the front porch of her home, which was also our childhood home (Grammy and PopPop's). We talk to each other as I hold a candle while standing in front of my home 1000 miles away. We both hope our daughters will continue this tradition.
In pockets for all your needs.
Laurel
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I had a Grammy K. She was the best woman I’ve ever. Known.
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