My Husband, My Life, My Love, My Family, My Cancer
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Chicagoan- I am hoping to get mine done 1 week apart. That is what my optometrist said- my vision is so bad that she is thinking the surgeon will do them 1 week apart vs 2 weeks. My optometrist said I will not be able to drive during that time between eyes, as my depth perception will be hampered. My glasses are thick. I cannot even see the big E on the eye chart without my glasses. So I will be looking thru my old glasses through the unrepaired eye and a new lens with the surgical eye. But I will see what the surgeon says on the 16th.
I think my brother-in-law will drive me home, but he has to check his schedule when we have a date for surgery. Or maybe I can ask my Pastor. Putting it out there is a good idea. I will need to see my optometrist 24 hours after the surgery, and since I cannot drive, I am planning on taking a taxi to the appointment. But after surgery, and being loopy, I don't think a taxi is a smart idea. I want someone I trust and know to take me home if I am loopy.
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Well, busy laundry day, still catching up on clothes and regular cloths not done previously. Got a blanket going in the big one, cloths going in the smaller one. I bought more floating lint filters as well. Amazing how much they collect in a small laundry.
Nothing on the go today, skipped recycling this week, there is always next week. Chores and money making, debating a treat breakfast, not sure yet or just take some bonus money I have and get necessities and make my own english muffin egg sandwich. Later, got more of the large meat pie to eat, may take the green beans, chop croutons and or chips and finish it off. The beans will need seasoning. Would be a decent meal. Edit, I am making dried pasta, I have a ton of it so will heat it through, put in a bowl. Added the rest of the meat pie in the fridge, not too much left. Poured too much bean juice, very soupy after heating it all. The flavours were good but must make sure that I am not turning it into a soup. Got full quickly so drained the pasta and stuff through a strainer and will use much less liquid next time. I did enjoy the flavour. Might just add green beans with the chips and croutons with cheese chopped in and heat up another portion later. Took a few bites of a chocolate bar in the fridge.
I hope everyone has a good day and in pockets for anyone who might need me.
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So I found the culprit of the non draining washer, as I was draining both washers, saw something at the back of the tub and it turned out to be a brown handkerchief. I figure the little bugger got out of the spin dryer and made its way into the plumbing. Did not notice at first but that would explain going from slow to a normal drain, will be sure everything is cleared of the spin dryer side. I will soak the handkerchief in one of the small washers in oxyclean and tide for a while and wash as normal, too small to go in bigger washers but just fine for the smaller one. I had also used vinegar and baking soda for the first reaction and rinsed out in vinegar which eventually pushed it far enough out that my squeezing the drain tube got the handkerchief on its way out. Next challenge for myself is to restore it to white. Love my challenges I give myself, also want cats to have enzyme powder for their food, mostly to make it taste really good but want to earn at least half that and get off Amazon as it is pricey.
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Mara-so satisfying that the mystery is solved!
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Hi everyone, just had good news wanted to share. My MRI results show significant improvement, with near complete resolution of the recurrent tumor in my right breast, and diminished skin invasive component..finally. A really good place to start from for this new line of treatment, taking it day at a time, month at a time, treatment line changes as they come and go. Still waiting on PET results. Should know tomorrow. Meet with my Northwell MO tomorrow and MSK MO Friday. Glad the radiation was helpful, been trying to get this skin invasion under control all year, am on 4 th line of treatment.
Still on vacation, enjoying the cold weather by staying inside lol.. cooking and reading, playing with the cats. Preparing my syllabi for the new semester. Today the sun is shining, snow from yesterday a memory. Hugs to all.
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I'm around, back in hospital for 2 weeks this time treating a deep seated infection in thr bad hip. Actually I was going to be admitted first for a week to get pain under control, but a soft egg sized mass developed on my hip overnight. It didn't hurt and I thought it was a boil or something and then it broke open and I woke up covered in goo one morning. So so so much goo. It didn't and still doesn't hurt but I'm not going to lie, there was actually a sense of palpable relief of pressure being released and some nerve pain I've been having stopped. That was the exact area I had been doing ice packs and heat packs and digging around with my fingers so I'm not sure what I brought to the surface but it was substantial. Thry wanted the goo and pus to drain and it has been, but its drying up now and I have a wad of bandages there.
Hospital has been uncomfortable and downright painful at times, mostly due to the crap beds. I keep getting caught on these trenches/ridges and I can't move out because the skin is stuck. They come to unstick me and oh man, my skin! I also have a catheter this time and a syringe driver so I'm completely helpless to the whims of the nurses taking care of me, most of whom seem to be working to rule due to budget cuts so that's super fun. I did finally get a lorazepam script after having multiple evenings of hysterics at 3am, just being stuck in thr bed, not having my limbs moved all day, this air pump for thr bed being so loud and general discomfort. Well see how tonight goes but it feels more positive and I have some more solutions I can access before going defcon 1.
It as going to take a week or two to get over hospital hangover this time I can tell. I did start new treatment Tukyska tonight so we will see how that goes. Apparenrly with my p53 mutation this disease is presenting more as a bone rather than breast cancer, hence why I have had such treatment failures in certain areas.
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Mara - if only you could fix all our problems the way you took care of the washer!!!!
Sondra - what an awful ordeal. I hear you about the hospital beds. I think I once developed a severe sciatica after I was hospitalized for 6 days. Took forever to resolve. Pocket duty for you and the new treatment.
Rlschaller - glad your MRI brought good news!
Candy - I hear cataract surgery is a breeze. Hoping that’s what you find it to be. Pocket duty for you. I remember my dad having cataract surgery back in 1971 and he spent a week flat on his back😳. I will likely need the same surgery this fall.
Here for pocket duty for everyone else as well. Hoping we are all safe, warm and avoiding all the bugs going around.
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@cookie54 Hooray for the stable PET. A great way to start the New Year!
@rlschaller Hooray for your good MRI news also. Improvement is always a bonus!
@candy-678 I will be praying for you and your cataract surgery. I had mine done two years ago and had no problems. I had a new procedure where they do both eyes on the same day. Since my DH was around and could care for me, I went for it. We were also moving out of state in two weeks so I jumped at getting them both done. It was fine. My surgeon moved me to the front of the cue he said because I was young and moving (I was 70 at the time!) lol but I gladly took it. There was a long back-up because of Covid delays. He also said my cancer meds speed up the cataract formation so it needed to get done soon. Thank God for good surgeons! I had my follow-up in Colorado so no problem there either. I rarely need to use my glasses now.
@sondraf My goodness girl. This is not good news. I am so sorry to read about your sore and hospital stay. It sounds scary and terrible. Hospital beds are the pits. Can they use a Purewick instead of a catheter? It is an external catheter and works wonders.
Well, it is snowing lightly and very cold and the roads are icy so I cancelled my PT for today. I hate doing it but my DH is still very sick and I don't want him to try to drive through all this since I don't drive anymore. Most of the school districts just delayed two hours so my DGD is back at school. I don't have another appointment for a week so hopefully it will all be cleared by then.
Take care.
@
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@rlschaller Thanks for sharing your good news!
@sondraf Sorry you are back in the hospital but to me, having all the goo come out sounds like a good development. Now all those mysterious fevers and excruciating hip pain make sense if there was a deep seated infection. Hopefully clearing up this infection will be a big positive change-but in the meantime-how I hate being helpless in the hospital. It's the worst, having to wait for nurses to get yourself in a comfortable position. I hope Tukyska will be very effective for you.
Now I better get out and do some shoveling. We had very little snow but it's cold so it's not melting. Stay safe everyone!
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sondra, I am so sorry to hear about your hospital stay and everything they are having to do for you, it just sounds so uncomfortable. In your pocket for the upcoming treatment and glad the lump is shrinking down. Don't blame you for having some middle of the night hysterics, I can empathize. Glad they gave you some lorazepam.
rlschaller, I am glad MRI results show improvement and resolution of the tumour. Enjoy the rest of your vacation too.
Chicagoan yes, I could not see it but something forced it out, probably from squeezing the drain pipe to force stuff out but also the vinegar and baking soda sent through the machine. Now hoping to turn it back to white. It is soaking in the sink right now.
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@cookie54 hurrah for your scan results! I almost missed it, you were kindly sending support to everyone else, as you usually do, and then there your news was at the bottom of your post.
@rlschaller hurrah for your scan results, too! Sounds like really good results, thank goodness.
@intolight good idea to cancel in that weather, been reading about severe winter weather in so much of the country. Good to be cautious.
@threetree good to see you, and taking breaks makes total sense to me.
@tanya_djamila thinking of you, and hoping your ONJ can be treated.
@candy-678 I live alone too, and the times I've had to ask someone to drive me home from a biopsy/surgery makes me feel kind of guilty, which I know is illogical. The dreaded question, "do you have someone to drive you home?" Ugh. And they're very clear, it can't be just a taxi driver, "you need someone with you". I
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Mara Way to go with your freebees, love it.You should have been a detective with that washer debacle!
threetree Sorry you have been feeling down we all understand and are wrapping you in a group hug. In your pocket for treatment tomorrow.
rischaller Congrats on wonderful news!!! Fingers crossed on the PET. Enjoy the rest of vacation.
sondraf Gosh girl you just can't catch a break! I'm sorry to hear that the hospital has been so awful but glad they found out the root of your issues. Sending good vibes and big hugs your way. Fingers crossed for Tukyska.
Candy It sounds like you have a good plan in place for your cataract surgery. Yeah agree definitely more comfortable to be driven by family or friends especially when your impaired. Are you getting it soon?
Hi to all who are here and I don't know what I would do without all of you! You are my people and I am eternally grateful that we have this platform to share our thoughts.💕
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Cookie- I have the consultation with the eye surgeon next week. Then they will put me on the surgery schedule- probably end of January/ first of Feb. Hoping the weather corporates. We just had a winter storm this last weekend with snow and ice, 5 inches. Schools and businesses closed. Roads horrible. And more snow forecasted for this Friday. My surgery will be 25 miles away in the next town over so if the weather is bad that will delay the plan.
I am dreading the sedation. With the Port removal in 2021 I awoke puky. Then, with the GYN procedure last month with that sedation I was puky again. I am going to tell the eye surgeon about that and see what he suggests for cataract surgery sedation.
I know that "everyone" gets cataract surgery, and it is pretty easy nowadays, but I dread some parts of it. The sedation, and with my bad vision it might not be too fun for that week between surgeries when my vision will be off.
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Candy, would they allow an anti nausea med to be taken before surgery to assist? Just wondering, in your pocket anyway.
Cookie, thanks, I was pretty stubborn and this time it did pay off.
I am presently doing laundry,there is not too much as I did catch up on stuff that was left behind. I have Herceptin today so will be checking the walk and salting to my satisfaction if needed. We are not thawing and freezing so much but I still prefer a clear walk. I will get dressed and check outside, if I do not like it, I will salt away. The front steps, sidewalk and end of driveway. I will also wear my little boots, they do have good traction and use the spike in my cane if need be. Only looks like light snow right now.We only had the one big snow and then not too much after that melted. I have not gone out beyond that except with DB and SIL. I have been able to resist alot of stupid shopping, most cat related stuff and lint filters for the washers. I am also going to save up for cat probiotics, I remember they LOVE the taste of that stuff and still trying to fatten Tigger up a bit. He eats well but is fairly skinny. He gets kitten food now for the calorie boost and more wet food. The probiotics would encourage more eating on his part.
I will likely have something like the egg sandwich and hashbrown. Put the cheese on the english muffin when I throw it in the breville to toast. The egg and hashbrown can be done at the same time since it would not trigger the circuit breaker since the microwave is only 700 W and the minigriddle uses 350 W. Heat egg for four minutes, makes the egg pretty firm but also keeps it the right size. Tonight, will have some sort of green beans, kale and cheese chopped into doritos and croutons, heat up in microwave for about 3 mins, turns the cheese into a crunchy mix. Not sure what else I would do with that but uses up stuff I do not like and turns it into a good meal.
I hope everyone has a good day and I am pockets for all who need me, Sondra, Mel and anyone else having a hard time with tests, hospital or surgery. Hugs going out to Sondra especially with being in the hospital acouple of weeks. I can empathize with you and the need to cry. I hope you get home soon.
Edit, heavier snow, no visible steps for me, thinking of sweeping them off since it is not wet snow and then salting, not sure how much effect the salting will do with a massive amount of snow. I will see, going to make a simple breakfast, get dressed and bring the salt and the broom. The steps are my biggest priority, I suck at snow, at this rate two canes may be in order, I will see. Other priority is a path to the Paratransit but I will figure that out later.
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Mara- I am going to ask when I consult the surgeon. I wish they did not have to give any sedation, but that is probably not likely.
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I wonder if my fear of snow will every go away, I got the main and two of the steps swept and salted but then needed to stop because I was so scared of falling. I feel foolish for that but will use two spiked canes, sidewalk has a fair bit of snow, I will just lift feet more and keep canes to either side of me. Surprised I was dressed and ready so early, still may go out later, I will have to see. Miss the days when I could wear sneakers when walking with snow and a bunch of ice underneath and not feel like I would fall, need to divorce that thought out of my head, cane keeps me safe, two will make me feel safer. I could also
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Crazy day today. For the first time in years I had to get a "regular" mammogram. I thought my doctor wanted me to have an ultrasound to supplement the CT scan. In order to get an ultrasound mammogram, the hospital required that I have a regular mammogram first. I was prepared for a 4 hour appointment. As you all know, the mammogram was painful. After the regular mammogram was over, the tech comes and says, the radiologist says you are stable. Come back in a year. I was livid. I insisted they contact my MO. Eventually I did get the ultrasound-maybe just to placate me. We'll see what the ultrasound shows but the whole process seemed ridiculous. What could a regular mammogram show that the CT scan I had in December didn't show?
I've been Stage 4 for so long-it was strange to be in the mammogram waiting room. Everyone else is very afraid that they might have breast cancer-for me-well, the worst has already happened. No one spoke but I felt like I live in such a different world than the other patients. My tech was clueless-she couldn't believe I hadn't had surgery, chemo or radiation. I kept my mouth shut instead of trying to educate her on standard protocols for Stage 4 de novo.
But at least I treated myself to a deluxe hot chocolate on the way home. It was over $6 but worth it!
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Chicagoan- Sorry you had to go thru that. My MO says I don't need mammograms anymore. But my PCP says I do. So they don't agree on the subject. So I did not have a mammogram done for 3-4 years but went ahead and had one done last year- 2024. My original tumor was removed thru a mastectomy on that breast in 2017, but I still have the remaining breast and the chest wall of the removed side. They just did a "normal" mammogram last year, no ultrasound. But I agree that you would think that a CT would see anything as well as a mammogram or maybe even better.
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Well made it too and from the hospital. Did have a fair amount of salt out there but side walks are not done at least not this morning, luckily the property manager was here and actually took my arm and walked me to the Paratransit ramp. Got off at hospital and for the first time, their sidewalks were slushy but no falls and the Paratransit driver took and arm and walked me to my front step area which is clear mostly thanks to my salting and sweeping. I envy people just walking along, not a care in the world and I am over here step here, step there blah blah blah. Herceptin was fine, watched a movie and the return trip home was pretty quick as well.
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My super day nurse Charlotte got me a new bed pump and amazingly it is 20 decibels quieter than thr old one. I was NOT insane!! All that gaslighting bs....my mood turned on a dime more or less once it was installed and I will finally be able to sleep tonight or even just watch TV because I couldn't hear anyone over the damn pump. She also got the plastics wound care team to look at my hip tomorrow, and I have an orthopedic surgeon consult on the morning though wtf is he really going to do. Interventional neurologist came by today, a really youngish Irishman, and they are suggesting burning out a patch associated with my pain areas in a 15 minute outpatient process. So hopefully making progress here.
Thanks for the well wishes everyone, I only skimmed as I am waiting on pain relief to kick in before we move to the toilet, but candy, I hope your cataract situation goes ok.
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rjshaller Glad to hear about the good news you received good news for your MRI and in your pocket for the skin invasion as well.
I am presently doing laundry, just some cloths, have some clothes I want to wear tonight so they will be washed later. Washing in the repaired washer but have to spin in the newer, larger one. Also getting new lint catchers ready by reinforcing them with zip ties around the edges. Going to Costco with DB and will ask for the Walmart trip I usually take to get frozen stuff there as I still enjoy it. Look for some clearance canned food or meats. We will see. I also noticed online that walmart has some free samples I can try so will get some tortillas and rice dishes I think. Got enough gift cards from the budget boosting that delivery would not cost too much for me..
Planning to go out and shovel the path for myself to get to the van easier tonight. Need a sidewalk and curbside path since deep snow is my Kryptonite.
Not much else on the agenda, just going to be figuring out meals, thinking I will cook up an egg in a bowl, toss beans in and heat 4 minutes. Bring out and chop up with croutons, some salad fixings, cheese and chips, I have quite a few chips to work though. 1 egg if make tiny amount of rice to go with OR 2 eggs if I decide to skip the rice. Have not decided yet. An egg sandwich could be good as well, still have english muffins to get, I will see.
Tanya, In your pocket for the ONJ and really hoping it can be treated.
Intolight, stay safe in that wintery weather. We had a fair amount of snow on Tuesday night but not too much happening here. Once I have breakfast, will be donning my boots and shoveling along the sidewalk, end of the apartment driveway and possibly shovelling out the curbside pile to make a couple of paths to make it easier tonight.
Threetree, hoping today finds you feeling better but if not as we all are I am wrapping you in a big hug as well.
Hoping everyone has a good day and in pockets for anyone who needs me, in own pocket to get paths made for myself.
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Just had a thought also and that was to take some cubed potatoes I have, defrost them and chop into an egg, make the egg sandwich and have the tomato taste in there, sounds good to me, use garlic on english muffin, cheese on one half and toast in the oven, add the egg and potato after.
Edited, I also added green beans and peppers to an egg, chopped the preheated egg, beans and peppers, added shredded cheese and tortilla chips. Took the chopped up stuff, microwaved another 4 mins, added KD cheese seasoning, sour cream seasoning and salt. No binder needed as the green beans and frozen peppers made it moist enough to handle the dry seasoning. I am full and it was very good.
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Irishlove-I picked up my Ibrance yesterday and was a bit worried b/c they pharmacy had not contacted me about doing updated paperwork for the Pfizer assistance program. I had a -0- co-pay so I guess all is good. I did order this Ibrance on December 30 but it wasn't approved until January. Hope yours will be fine too.
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Mara Glad you made out well with traveling to your appointment with the snow and ice. What a sweet PT driver you had to make sure you made it safely to the door. I can only imagine how frustrating it can be to walk slower and cautiously. We certainly have our moments when we grieve our former lives.
chicagoan Well I'm glad the mammo looked good but sorry to hear it was such a debacle. So I guess your MO wanted to look closely at your breast tissue since CT isn't choice modality for that? I'm sure you will discuss on next visit. Yea I agree with the waiting room feeling of living in a totally different world than most others there. Testing can be such a frustrating and sometimes lonely experience . Last week I heard 2 women talking about being worried waiting for their mammo's and in my head I was like lady you have no idea. I hope you don't have to enter this breast cancer world!
Candy Well I hope the weather cooperates on your surgery day. The anticipation of it all can be stressful enough. They should be able to give you a little zofran I would think to help the nausea.
sondraf Well kudos to nurse Charlotte for saving the day! Sometimes it's just the simple things we need to maintain our sanity lol. I hope you get out of there sooner than later and this outpatient procedure helps! Sleep well.
Thinking of all here, hope it's been a half decent week.
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Thank you Cookie, planning to get out and see what else may need salt or possible shovel as DB coming today since SIL was ill yesterday. Just going to put a heavy level of the salt on the sidewalk in front of the building up the sidewalk to end of driveway. He has a van so high step up but can pull myself up as well. I will see later on.
I did all of my wash last night so no wash for today so far. I would have to throw blankets if I want to wash stuff. I could stand to do the big ones but have to find a good size container to empty the water into since they require the Panda. I will find one, only two of the blankets require the bigger spinner, newer and bigger spinner can handle all other blankets otherwise. Might just save blankets for the weekend.
Other than that as said above, I am shopping today, planning eggs from Costco, Tea as well. Thinking of putting a Walmart order together even with shopping, mostly pantry staples and a bit of frozen stuff. The tea is less expensive through Walmart than anywhere else and I have a couple of gift cards to remove delivery cost.
Planning egg meals since I may also pick them up at Costco. May make an egg sandwich with chopped veggies, take the garlic and cheese with the english muffin on one side and toast it. I think it would be good. Later cook an egg again and chop in cheese again. Not sure about it but I will see. Planning to get a proper pizza from Walmart and cook up whenever I make the order to Walmart. Always gives some extra meals.
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I hit comment before wishing everyone a good day and in pockets for everyone who needs me and in my pocket to get stuff that I want to do done.
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I’m just sitting here in the living room, quiet, trying to gather the courage to talk.
First and foremost, I hope Mel is doing well ❤️ Mara you are a dear, keeping the living room active ❤️
SF, a very belated happy birthday—I’m sure you enjoyed it! The comment you mentioned, "The dreaded question, 'Do you have someone to drive you home?' they're very clear, it can't be just a taxi driver. you need someone with you" really hit home for me. I needed someone for my biopsy, which a kind friend accepted, and someone for the Y90 and mapping. It was so hard to find anyone. My sister is in distance, and those nearby had their own busy schedules.
To be honest, I’m tired of hearing comments like, “You’ll be fine,” so I’ve learned to keep my mouth shut and handle mBC on my own. It’s shocking for those around me to realize that, yes, I do have serious health conditions.
With all the pain and discomfort, I finally applied for disability, and this time, it was approved. The earnings might not be much, but I simply can’t take the physical and mental stress of working anymore. I never imagined myself in my mid-40s, being disabled and dealing with so many conditions, some of which could have been prevented if not for the healthcare system.
Sondra, what can I say about your situation and mine? We are victims of a faulty health system. My case was mishandled big time, and I feel so helpless. No matter how hard I try, when the system decides to slow things down or, worse, refuses to document the facts, what can I do?
rlschaller, I’m so glad about your good results, congratulations!
Tanya, I had a root canal on 2 of my teeth, and it helped a lot with the necrosis pain.
Sorry for skipping, I am just skimming through 300+ posts, but I wanted to catch up.
big hugs
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Snowdrop, I do think the retirement will help a lot with the stuff you are dealing with and glad that is an option for you. Less stress than worry about working which can be a lot.
I did go out and put a fair amount of salt outside, emptied the container but I have plenty more to use. I did not feel as bad outside. Decided against cleats on my feet as they are uncomfortable, if I feel nervous can use two canes walking as well. Can put my arms ahead and step into them or use them one at a time. I will also put down the spikes for both of them. I also learned how walking like a penguin is not a good way to walk on slippy sections, throws you more off balance. Small marching steps are the way to go apparently.
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Well, took a fall outside. I feel good it was not about balance but about not seeing a curb marker in a parking lot which was covered in snow. I didn't cry but my hip was a bit sore walking in Walmart. DB and nephew both helped me up and we resumed shopping.
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