My Husband, My Life, My Love, My Family, My Cancer
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@chicagoan I was discharged first and discovered I had enzymes and immodium so I took them both and it all turned off, that was good.
First meal post, garlic crispy lentils and possible rice, I will see, am starving. Cats are mad at me for going away but they are alive so DB and SIL did a good job. Have to take steroid, 2mg twice a day until they are gone, oh well.
I will have staples to have taken out next week I believe, possibly week after. That will allow wigs and scarves again. They said I would have to go to emerg to have them removed BUT a nurse lives upstairs from me who said she could do it because I have the special tool.
I am happy this portion is over of the brain surgery. Nurses were nice but I was extra depressed and not feeling well without enzymes and immodium, that will help with the steroids and other med.
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@mara51506 - Great news, so glad to hear you are home now. I hope you have a wonderful sleep tonight in your own bed with the kitties.😊
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@mara51506 Oh what great news, our resident chef will be cooking up a storm! Love you for sharing yourself with us. I started to call my Grammy "the good cooker" when I was young. I'm passing that title on to you Mara. So happy to have our Mara back.
The medicine mix up got straightened out after 4 phone calls. It's nice and quiet in the house. DH and I are enjoying the no drama zone. I enjoy not having to wait hours or days for washer/dryer. I have the combo all in one appliance, but it takes 2 to 3 times the amount of time to wash and dry. Otherwise I like that I don't have to bend over and pull out wet, heavy clothes to transfer to dryer.
I have gastro appt. tomorrow to see what's up with swallowing difficulties. Mostly at the end of the day when I'm tired and mostly fluid. Last night my brain wouldn't let me swallow siliva. Kinda scary. I do believe it's MS related, but we will see. MS is always lurking and today was a harder day. Blurred vision with pain in the eye. Possibly optic neuritis so I found an opthalmologist. No messing around with eyes. Hopefully get appt. this week. Stayed in bed all day. Gee what a treat… Cold and rainy outside.
A sweet story for you all. A male cardinal was in the bottlebrush tree at my front window. He stayed for hours! Even when I opened the door to take his picture. I worried he was ill. Then I realized he was looking at my cardinal night light in that window. LOL. Just the laugh I needed. Going to be around 29 Friday a.m. Bringing in plants again and covering what I can't. Always a lot of work but I know they appreciate it and show off as soon as they can flower again.
Thank you everyone for guiding me with loving, caring words. Your support means the world to me. In everyone's pocket for all their needs.
Irishlove
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@mara51506 so glad you are home! Hope you can take it easy, take all the immodium your body needs, and recover at your own pace. Your kitties will forgive you!
@xsuzx I was dx stage 4 at 50, worked until 54 and then once I figured out exactly what my pension would be, in combination with SSDI, took early retirement. My husband had died during that time as well, and I just no longer had the passion (or the energy!) to keep up with the 10+ hour days. Also, I had a bone biopsy that went well, but I agree that it's definitely different than a bone marrow biopsy.
@threetree thinking of you and sending you hugs.
@intolight also thinking of you, and sending hugs.
@shanagirl hugs for you, too!
@chicagoan more hugs coming right at you!
@cookie54 and even more hugs headed your way!
@irishlove so glad your prescription got figured out. Hugs for you!
@eleanora I hear you about isolating more so we don't get the flu, etc, and how it can be lonely. Really big hug for you.
This is a very huggy post. 😊😊😊
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@mara51506 So happy to hear you got home yesterday! Hope you had a good night's sleep and the kitties are back to showing love soon. I bet you missed your creative meals even more after hospital food.Enjoy every bite and enjoy the comforts of your home.❣️
@sf-cakes Hi there, what's happening…nice to see ya!
@xsuzx Hi there, welcome in..I don't think I met you? We love our little sister family( thanks to Mel) and I hope to you do too.I was diagnosed at 50 , worked through Stages 1-3 which was a couple years. Then when diagnosed Stage IV , worked a couple months but it became a bit too much for me so I retired.I was very fortunate to be in the position to and SSDI helps. For me healthcare was the toughest part being my DH was self employed so I carried the benefits. We suffered through paying Cobra until early MC kicked in for me and he is on his own plan. I hope you feel better so you can get plan the lunches and walks you mentioned.
@irishlove Glad to hear your scripts were straightened out and you are having more relaxing times at home. Oh how cute is that cardinal I guess he likes the company lol. Sheesh you guys in Fla. are getting some real cold snaps! I hope this is the last time you have to do a plant swap.May you have another peaceful day today .
All ok here quiet week except for my usual MO appt . Hope to get out any enjoy a nice sunny walk later. Hi to all here hope you have a peaceful day🌞
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@sfcakes, I am very glad to be home too. Surrounded by cats already which is nice, yes I plan to keep up with immodium not exceeding the 8 per day max. Digestive enzyme is also good and may eat up my probiotics at some point in the day who knows or get probiotic yogurt. Once done steroids, it would not surprise me if everything settled down Bananas in the smoothie may be good, I got 2 of them and high protein yogurt as well. Still have mio powdered fruit punch flavour to put in as well. Picked up a couple frozen noodles and eggs as well and some burritos I quite enjoy. Was only 20 bucks including delivery and tips.
Cats are not mad at me anymore which is good, I am surrounded on the couch, Tigger was meowing a lot this morning because I close the bedroom door.
@irishlove Thank you for the cooking kudos, as I eat up some of my food, it makes me feel good. The groceries were 34 dollars but I do not mind and no pantry stuff until I get through what I have. My own food
Other than getting delivery from Walmart, just keeping up tidying so it never gets overwhelming again, SIL cleaned and I do appreciate it, just need to find stuff, rearrange the living room area around the desk possibly.
Finally, I want to wish EVERYONE a good day and in pockets for all, I appreciate all pocket due done for me as well. Could feel the support from my room.
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Mara - so glad you are home and can recover comfortably. Hospitals are known for lousy beds and no peace and quiet. Glad your kitties have gotten over their snit and you have regained their favor.
Irish - saw how cold it was going to be in Florida. Stay warm!
Here for pocket duty for all…..
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@cookie54 I am enjoying being home, playing where did SIL put this stuff. SIL busted her butt organizing and clearing stuff out from the back to go to the trash. I mostly like it tbh, might make a couple minor changes, love and appreciate the pantry rack and how she organized my containers. Still going through to locate stuff. Bedroom apparently is not being used for any sort of food storage either, my clothes are in dresser. Just need to find rice. I will look for it myself, giving SIL a peaceful day to herself.
Another different thing for me is a made bed, I need to make the bed at least when I go to bed, keep up blankets in the wash. Oh well, it takes 2 mins to sweep and mop up the apartment and I really want to keep it up for myself, not just other people.
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@irishlove - Love the cardinal story. Hope it's nothing serious with your swallowing.
@sf-cakes - Hugs right back!
@mara51506 - Sounds like you settling in at home real well. How wonderful that your sister-in-law did so much for you. You are very lucky, indeed! I'm still staying in your pocket as you recover more completely.
Just want to say hi and good morning to all in Mel's living room. I just love this group and I second SF-cakes big group hug. You all have helped and meant so much to me, as I continue to try and navigate this big nightmare. Thanks to everyone!
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@threetree You summarize my sentiments exactly. Welcome home Mara, and many hugs to everyone struggling today. Anxious to meet with MO this afternoon and decide on whether to navigate through chemo which would only buy me struggle time, or go on hospice and have more QOL for a short time. So many moving parts… Mara, you conquer the struggle with dignity.
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Well, ordered my Walmart food, got a banana, yogurt coming, couple of frozen pastas coming and a chocolate bar and also eggs.
Planning on a burrito with a hashbrown possibly. I do know where the rice is now. Once all that is done, clean dishes and put laundry into spinner. After lunch and a bit later, looking to make a yogurt, apple sauce, banana smoothie type think
I did text SIL and she told me where it was so that is good.
Well dropped bottle of famotidine and the pills spilled all over the place so what I did was order the brand name pepcid AC to replace pill being taken with the steroids as well.
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@intolight What a tough decision that you face. I still don't know what I will do when I am at that crossroads. Part of me leans to trying chemo just to see what it is like. I also wonder if my QOL might be better over all with chemo keeping the cancer at bay. But then I may just decide to go off treatment and see how things go. Prayers for your discernment at this difficult time.
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@chicagoan Thank you. I did one round of chemo and it was not good (when is it ever?) I was planning on going for more and sticking it out knowing several ladies here did fine, but I feel like I am making things worse. Today is the first day I actually feel like I can do something and it has been a week. Will my body adjust any? That's one question I have for the oncologist today. I want her help in dx the symptoms.
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@intolight-a man at church has influenced my thinking. He has been on maintenance chemo for quite some time. During "chemo week," he and his wife plan nothing and just stick to close to home. But on weeks 2 and 3 he lives a pretty good life-he's a song leader and active in various ministries, socializes etc. He also looks pretty good which I am embarrassed to admit is a factor for me. If my chemo was like his-horrible for one week but back to living life for 2 more weeks, I would do it. But I won't know until I am in that position and know how "horrible" the horrible is and how well I feel on the off weeks. God grant you wisdom.
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@chicagoan That is one scenario I would accept. Unfortunately for me my chemo is currently scheduled for two weeks on and one week off. I would say yes to the other schedule. My MO did say we could adjust things depending on how I react. I shall know soon.
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@intolight Two weeks on, one week off sounds really rough. Keep us posted on what you and your MO figure out.
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I’m on Doxil which is once a month. I have scans tomorrow so will find out if it was a good choice. I get CT and bone scans which take about 4 hrs. Most of it is just sitting around. Anyone who wants to jump in my pockets is welcome.
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@wren44 in your pocket! Waiting around for the bone scan, ugh. I know that stuff has to "settle" on the bones after it's injected, but I'm usually very impatient, c'mon let's get this over with already...
@intolight in your pocket, as well. ❤️
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@wren44 - Count me in your pocket too. Good luck with these. I absolutely know the sitting around and waiting for hours with the CT and bone scans. I have a friend who comes and picks me up and accompanies me, and we usually start out in the mid morning where I get the injection, then I get the CT; we go to lunch, and then go back and do the bone scan, before leaving. It does take several hours like you noted, but it does help with a friend and that break in the sessions where we can go get lunch or whatever. Again, best of luck!
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@wren44 In your pocket waiting, that is certainly a long wait to have between injection and scan. Waiting is never much fun.
Welp, suppertime here, did not accomplish much yet. Just having frozen penne alfredo and chicken, once cooked just put mostly dry seasoning with a squirt of the wet. For dessert think I am finally doing the yogurts, banana and mio. Overall lazy day but making sure floor, kitchen and laundry are getting done as needed, want all done by 9pm I think. I just need it done once a day.
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Chemo update: My oncologist is going to adjust the chemo dosage and pre-chemo meds. She thinks the intense pain I had was because I have a couple of tumors on my spine which has nerves which wrap around my torso. She also ordered an MRI to look more closely at them since it has been a year since my last MRI there, and see if she can radiate one or both. Looking at the latst CT scans she thinks so. That is the plan going forward. I am good with that.
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Intolight- glad you have a plan ❤️ you can live with and feels good for you. My current chemo is every three weeks, and I feel underwater for a day or two but normal rest of the time lol which is probably relative…. Some chemos are much easier to tolerate. You never know, I have been on some form of chemo for three years now. It’s fine, it is what it is and every body responds differently. Glad you have a MO who is open to adjustments. Pain is never easy, that is the hard one. I’m crossing my fingers for you and wishing relief that radiation might ease it.
wren - hoping in your pocket too tomorrow, I hope your scans are fast and your patience to pass the time includes fun reading or something digital to watch?
mara- kitties are so forgiving, glad you are home with them and they are back to natural meows for food and cuddle time
cookie - sorry about the eagles…Re working , I’m 67 and still work full time, I teach and do admin in an university and love it. I like helping people and sharing , learning. But I can work from home as a medical accommodation which makes all the difference and never felt too sick to focus. When I’d feel under the weather I can nap and make up my own hours, so it’s a unique set up. Always an individual decision. As most of life.
Hugs to all and happy Tuesday ❤️
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@intolight That sounds like a good plan. Hope that some of the tumors can be radiated-it makes such a difference.
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threetree~ thinking about you. Sending strong hugs for extra support.
Mara~ also on my mind. One day at a time my friend , my strong friend.
Irish~Hope all is worked out. With your meds. God knows I recently had some issues myself. Enough to drive you mad on top of everything. We have cancer. Something we don’t want. But we have to fight our way every single way to get things done in the medical world. Between costs. Wrong doctors being jerks. It’s like a deli counter. Next! I’m so sick of it!!! Love to all. Hello Tanya.how are you? Mae. Haven’t seen you in a long while. Hope you’re doing well with your pack! Night! Night!5 -
@micmel - Oh Mel, hugs right back and than you so much for the kind words. You are so spot on about what a struggle this is, and I really relate to the way you have described it with the costs, sometimes "jerk doctors", our need to fight our way through the medical system, etc. All so very true, and so exhausting and demoralizing. Hope you are doing reasonably well these days and that Gabby is doing better and better everyday 💙!
I too would love to know how @illimae is doing.
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@threetree in your pockets on radiation possibly relieving pain from a met. Sounds like a good approach.
@micmel I did get some sleep, broken by steroids and the way steroids get me thinking more. Not about anything too deep, just ways to keep most of what SIL did to organize my apartment, moving some stuff to make it better for me. She rearranged some shelves and the pantry there is good, going to not get anymore pantry stuff for a while, meals combining pantry and other stuff.
@rlschaller My cats are sitting next to me on each side, I struggle getting up joking sort of.
I am going back to the cancer clinic the week of feb 18, got an echo and herceptin. It will be a longer appointment so will need to put my patience on in full force as it will be a loading dose, gonna take forever. Not sure how many loading doses I will need but I will see. I will also meet with surgeon again, That will be an early appointment and will take paratransit as they start up around 6am.
Other thing I must remark on are my black bruises, top of hand and the left forearm, it looks so gross. Miss wigs too but cannot wear them until staples out next week. I have covered my head in loose scarves as my head tends to get cold. Once staples are out, will trim biohair some.
First thing I am having because I am hungry is a bunch of yogurt, applesauce added, two bananas and the mio fruit punch added for my taste. It did taste very good, I also want some eggs and hashbrowns. Should have got a trivet for the air fryer due to wanting them to sit like toast and heat up in there
I will keep reading throughout the day, post if anything interesting happens in my house, eating my way to health.
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@wren44 Sorry I’m late getting in your pocket but I’m here now with my fingers crossed for good results 🤞🏻Hope all went smoothly.
@mara51506 Sounds like your falling back in to a nice routine. Glad you feel well enough to cook too. Countdown for staples being removed so you can get back to some “normalcy” wigs included.
@intolight Glad to hear your MO is flexible with your plan. Glued in your pocket for smooth and successful treatment.
@rlschaller Hey there, ugh the Eagles lol. Thanks they didn’t deserve to win , they just didn’t have a fight in them this year! I will continue to watch the playoffs and adopt a team lol. Hope you are well.
@threetree Thinking of you and we all love you right back!
Waving hi to all and wishing you a peaceful evening ❌⭕️
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Praise be, finally my digestion has started to settle down, I did take between 6 and 8 loperamide a day, nothing else was hitting it. I am glad it was not illness as I certainly have not taken it easy with food. I had the queso bowl tonight and put sour cream and onion dry seasoning and a spoonful of actual sour cream. Yummy, later had some peanut butter and ate it with a spoon.
@cookie54 Yes, the staples will come out next week on wednesday and yes, back to the wigs. As chance had it, my upstairs neighbour is a nurse at the same hospital so they gave me the staple remover tool and she said call her to remove them.
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@intolight Oh gosh I hope your plan is just perfect. It was scary to read the path you might have chosen But then again we all will be facing decisions. @wren44 In your pocket gal. Hope all went smoothly and good results. @mara51506 Oh girl you better slow down a bit. Those things that have been moved will show up. Speak to kitties about them. I'm sure they are getting even with you for leaving them for a bit.
Saw Gastro, he ordered an endoscope. It's hard distinguishing symptoms due to MS or cancer. Finally he agreed with me to set an appt. to see speech pathologist who will do barrium? swallowing test. Primary doc insisted on Gastro. I really find it very difficult, especially at night, to swallow liquid. That includes taking pills. The other night I couldn't swallow at all. It frightened me, but passed quickly.
Saw GP today, UTI is cleared, so the AZO strip test read positive yesterday after 7 days of treatment. It was a false positive. Now the b.s. we go thru. I don't have my Ibrance from the pharmacy used by cancer centre. I rec'd a grant but things aren't going smoothly in delivery. Was suppose to be here Monday. Not here yet, so I called. Now I'll need to go to MO's offce to pick up tomorrow. Never had to do that before. I'm thrilled with the grant and hope things go smoother in the future.
Today I feel the pain is the worse in a long, long time. A couple tears and a few words of why do I do this to myself, and made it thru the day. Hope to go to sleep and try again tomorrow. We do have work to do bringing plants and flowers in. Set up flower racks at the big window in the living room. The bigger pots will be wrapped best as we can and hope. We are looking at temp. below 30 Thursday night. Some are calling for light snow. The birds must know it's coming because they fed heavily. Saw my first mocking bird and bird bath and feeder.
Stay warm, be well and bless each and everyone of you.
Laurel
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Well, sleeping was two big chunks. On couch last night til 2am, then went to bed 4am then got up 730am. Pretty good chunks of sleep I think. Headaches are less, top of skull feels numb but that is OK. There is occasional pain but not enough needing Tylenol at this point. My probiotic will be taken first then steroid with breakfast, the famitodine, enzyme and usual immodium, only one this time. I take those everyday. It does not hurt my digestion but aids in a normal digestive tract for me
Doing up some laundry, some of it was pretty gray looking from wiping down different spots in apartment, I decided to get laundry disinfectant. I put regular detergent first. Drain, put in a bit of the laundry disinfectant for another shorter cycle, drain and do a final vinegar rinse, shorter cycle again then spin and dry it. More cycles but like the idea of getting rid of anything germy. The fact that I have an extra step to do is just a bonus.
Planning the organization of stuff I keep on couch and fishing out what got put under couch during a vacuum session, my sewing kit was amongst those, making bed and sweeping and mopping. Almost did a shop again for unneeded thing, was goind to order more compostable bags to hang a container on the kitchen cabinet door but realize that is unnessary, just trim down one of my bags of garbage to fit. Reason separating that is it is odour free allowing me to keep scraps til garbage day when I can throw it all out.
Planning on a big taco, queso, beefless ground and some lentils, I think mexican is the way I am feeling. Most stuff done in air fryer. I also need to make up a beef and macaroni pkg, would keep in fridge as a side dish. No more grocery shopping is needed probably for a couple of weeks. Even freezer cannot take more stuff. My budget may expand as I feel no need to buy a ton of stuff.
I hope everyone has a good day, in pockets for all and my own to get stuff I want done. Thinking have blocks of time like between now and 11 or 12pm and do at least one good sweep, laundry, mop and simple stuff. Sweeping comes up repeatedly anyway due to litter tracking. My problem is just to complete a task before moving on. I also am taking shorter breaks as well. Helps chunking away, rest chunk away etc. Blankets also getting the special treatment at least once a week. Same with cat area, pull out the box and mat underneath, sweep and mop at least once a week. Swapping out spray used by SIL, prefer a simple vinegar spray for my floors.
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