My Husband, My Life, My Love, My Family, My Cancer
Comments
-
Great job Mae, I would not be surprised if you got your goals done.
I did go to the postal depot to check for mail but they were closed up tight before 130pm. They close at 4pm, I debated waiting for an hour but ultimately decided to head home instead. I will aim to be there by 10 am Monday. Hope there is nothing urgent for me. It is a nice day today so it was not bad to walk to and from the bus stop. I also used my cane for the first time when going out. It definitely takes some getting used to but I persisted. Not sure if I felt more balanced but I did not stumble so that was good.
0 -
Hi everyone, well my latest petscan was really crap, a new lesion in my liver, brain mets that were apparently there on my last scan in June that no one responsible for reading the results thought to put in the report to my oncologist, she is furious, so am I to be honest, but they apparently have been treated, whatever that means and aren't causing any brain swelling at this time, Sanju has ordered an emergency MRI to see what's going on, you'd think that was enough bad news for one day, nope, I've also got ONJ in my lower jaw and also need another operation to fix the seton stent that isn't draining so the fistula is infected again so I have to have more surgery on Tuesday to have it cleaned out and the stent replaced. So all in all yesterday sucked and to top it all off I forgot to get my script for my painkillers. I hope you all have a better weekend than me
0 -
Geez Kitty, that’s a lot of crap to deal with. Did you have a brain mets diagnosis before or is this unacceptable omission completely new? As for “treated”, it usually refers to how a tumor looks or shrinks after radiation but that result can be a response to some chemos that cross the blood brain barrier. Your doctors should be scrambling to put right some big mistakes. I wish you better care and healing.
0 -
oh kitty I'm so very sorry for all of this. I hope that it can be beaten back. Not knowing something is there is annoying. How did that happen ? I'm sorry about your liver. They have a lot of tricks with the liver. I had a resection at one point. I'll keep you in my thoughts and we'll all be in your pocket.
Hello early modern~ nice go see you.
Tanya. Glad your safe KBL. You too. Anyone from Florida. I'm thinking of you and am so sorry that thiscrap happens.
My sisters hair is starting to fall out. It's so sad. I hate seeing someone I love going through this. When it was me. It was different somehow. I hate cancer and all of the things it brings with it. Wreckage. Sadness . Loss. Isolated feelings. Depression, limitations. Fear. Anxiety. Stress in family and patient. . Financial burdens . Friendship changes .body changes, burden feelings and insecurities. I could go on. Cancer changed everything for me. I hate it.
0 -
No Mae, it's completely new and out of left field, I hope we can get on top of it, I've had no symptoms either. I refuse to stress over it though, it won't change anything and will just make me feel worse.
0 -
Kitty, I am sorry that your scan and day overall were so crappy. We have enough to deal with without having to deal with all you are dealing with. In your pocket for future surgery and treatment.
Mel, I empathize with everything you are saying and cancer certainly has taken a lot away from my life as well. I don't yet have physical challenges given by the cancer but definitely the financial is up there after losing my ability to work.
I feel silly, I was kind of PO'd that the post office closed but when I looked it up, apparently it was National Day for Truth and Reconciliation Day for the Northwest Territories. Canada Post had today off for that reason.
0 -
Kitty - damn! I'm so sorry for all that's going on with you. I agree, no point to be stressed or mad about it now, just go forward and try to turn it around. I don’t know why this text is bold.
Mae, the bar sounds like it will be something, and you have so much energy! Cooling off down to lower 90's high 80’s herethough so that's progress!
Mara, that's terrible about your nephew, I can't imagine working with the general public these days. I don't replace anything till it's absolutely necessary. Need a coffee maker but we have Moka kettle that works. Coffee grinder on its last leg, but if you hold it just right, it works. Many chipped dishes. Good job on the article!
Mel - I hear you on cancer changes. I feel for your sister. My DH made a funny joke as I shed a few tears while he shaved all my hair off almost almost 2 years ago. Due to whole brain radiation, it's never grown back. I have a good wig for going to dinner, caps, wraps, and bald/Gargamel otherwise. I can honestly say I don't miss my hair, less work, less money, but there are other things I miss like energy, no side effects, and not stressing out every three months.
Hope all those with weather worries get back to normal soon- Living, Tanya, KBL
Earlymod- so sorry for all DP is going through. May it get better soon!
0 -
my brain MRI showed the “still numerous” brain Mets but no new ones or growth so I’ll take it and run. Had CT scan of liver, lungs,and all that. Will get results on Wednesday but my main concern is the brain these days.
So now in my pledge to make the most of my time I have become slightly addicted to Overcooked, a video game where you chop, cook,and push orders out in time. Maybe it’s good for my brain, probably not though. I really try to limit time spent playing. Trying to get DH to play with me as I can really use some help pushing out these burgers before I set the kitchen on fire.
0 -
Videogames are actually good for the brain. Keep playing.
0 -
Oh Kitty I am so sorry. So much for you to go thru.
0 -
Dear Kitty,
Well that just plain sucks. You are one of the strongest ladies I’ve come to know on the boards, so I know that you will weather this storm just like all of the others. So you’d better put on the dress with some BIG pockets because a lot of us want to jump in!!! Seriously Kitty, we are here for you.
0 -
Kitty, What a horrible thing to have happen. It's awful that the brain mets weren't reported when they were first discovered. It is good that your treatment was effective on those brain mets in spite of the terrible oversight. Now you can begin an even stronger attack against them. Btw, I was also recently diagnosed with mets to the brain as well as the dura. I began whole brain radiation (WBR) two days ago. It was incredibly fast. I have 8 more treatments to go. You have ONJ as well as brain mets? Talk about a double whammy. I hope that all your treatments fall into place and you can return to some semblance of normalcy soon.
Kikomoon, The brain mets report sounds pretty good to me. I hope the results from scan of liver, lungs, etc are positive, too. I don't play video games, but maybe I should. I do play Wordle every day as well as some other free word games from The NY Times. I am hoping that they keep my mind somewhat sharp.
Mae, You are so busy. How do you do it?
Mel, I hope your sister is doing okay. As you know, the early weeks can be the most difficult as it causes such a big adjustment to life in general. I have been wearing caps and scarves all summer. Now that the cool air has returned, I might go back to a wig. My cancer center has free wigs, so I might check it out. Otherwise I will use my old ones although one of them is isn't in the best condition. I have been enjoying seeing all your paintings. They are beautiful.
Mara, it's too bad you went all the e way to the post office only to find out it was closer. At least you got out for some fresh air. I am glad you took the bus.
Candy, Did they ever figure out what your fever was from? Is it gone now? I hope you are okay.
Booboo, it is good to see you posting. I hope your pain is under control
Goldens, When will you have the knee replacement surgery? I always enjoy seeing picture of your dogs. I have a gooseneck retriever. She has a wonderful temperament. She is a bit overweight right now oops. I call her my fur factory.
I hope that all of you who were impacted by the recent hurricanes/storms are recovering from the damage. The picture are just breathtakingly horrible.
Hello to everyone I missed. This message is already way too long.
Hugs and prayers from Lynne
0 -
50’s, I’m not sure how I do it but I’ve always been doing something. I never had fatigue during my original chemo, so it’s odd that Enhertu is able to knock me down for a few days. I can sit around watching tv for a few hours but I always find something that needs to be done several times per day. I’m just glad my knee is better because those few days of inactivity were making me nuts.
Today we’ll finish painting the deck and I plan to do a bit in the beach bar after. I’m caught up on all my usual British mysteries, so I am rewatching Hart to Hart from the 80’s and wow, it’s so unintentionally hilarious, there’s a creepy or criminal guy lurking around the corner in every episode.
0 -
50'sgirl- THank you for mentioning me. I have been reading along, but just not posting much. I am still having fevers. I am keeping a log. My days start out with normal temp-- 98 degrees. By afternoon up to 99.something and maxing out at 100.5. Every day for the last week. Urine test negative for UTI. Chest x- ray negative. Blood cultures negative. Covid test, plus influenza and other respiratory tests, negative. PCP said that MBC patients can have low grade temps. I asked MO (thru the portal) and the nurse responded that Yes cancer patients can run fevers. I am to notify them of over 100.5- 101 or if I feel ill. I always feel "ill"-- fatigue and nausea. But I guess more ill?? I do have a dry cough and a clear runny nose--- sinuses?? But no productive cough, and nasal drainage is clear. Virus of some kind?? Just something else to add to the woohoo of MBC. I sure don't feel like enjoying fall activities. Beautiful weekend here with lots of activities to choose from, but tired, nauseous, coughing, and feverish. Woohoo.
0 -
Wow, so much going on. KittyKat, I'm so sorry. What a boatload of stuff to deal with!
mel, I'm thinking about both you and your sister. I don't know if it helps, but sometimes it does - just knowing people care.
Pink-tober is upon us. I'm finishing up my blog post for tomorrow and I've already seen one IG post from a friend to "Get those puppies checked!" You know, it's the one with the dogs with pink balloons strapped to their chests. It's one that I particularly dislike. How do I mention it in my blog post and not hurt my friend? Maybe I'll message her first and let her know that I'm not pointing her out in particular. Any ideas?
Carol
0 -
Candy, It must be frustrating to have a fever on top of all the other SEs you were already experiencing. I wish they could do SOMETHING to help so you could feel somewhat normal again. You have had it rough for quite a while. I was having daily headaches for several weeks before my recent brain mets diagnosis. I was prescribed Decadron (and WBR), and I started taking it reluctantly. It brought me relief, thank goodness. It would have been hard to tolerate them much longer. Luckily, I am an odd duck and do not suffer from insomnia while on steroids. All that was a roundabout way to say that I really do hope they find someway to help you, too.
My 17 year old grandson invited my dh and me out to a late breakfast this morning. It is the first time we have been to a restaurant in a very long time. It wasn’t crowded, and we were seated away from people. It was nice to spend some time with our grandson. He went out of his way to think of us in spite of being busy with school, a part-time job, his high school senior project, community service required for graduation, and college applications. It must be nice to have the energy of a teenager.
It is very cloudy here today, but the rain from Ian isn’t expected to come up this far north. Tomorrow we are planning to attend another grandson’s flag football game. It will be cool, but I will dress accordingly and take a blanket, too. The games are fun to watch. The players are all 12 or 13. There is no pressure of stress. No one gets hurt.They just seem to have a lot of fun. They play 20 minute halves, running time, so the games are quick, too.
0 -
Hi all, I just want to introduce myself and hope I can join this supportive forum. Diagnosed with bone mets earlier this week. I’ll have radiation and my MO is suggesting a clinical trial. Or letrozole and ibrance. I am 62, have 4 grown, married kids; and 4 beautiful grandchildren. My husband and I are fortunate enough to see them often. I am still in the “is this for real” space. But I’m adjusting. Just wanted to say hello.
0 -
believe~ hello and welcome to the living room. We all come here to support and care for each other during goo and bad , difficult times. We have built a wonderful group of sisters that honestly care for one one another. Just take one day at a time or one emotion at a time. I'm sorry you have to be too n the place no one wants to be. But at least you found us. Hugs to welcome you.
0 -
Hi believe, welcome to Mel's living room, somewhere none of us ever dreamed we'd be but everyone one here has been wonderfully supportive since I first ventured in, they've given me the strength i need to get through this crap hand we've all been dealt.
0 -
Believe60, Hi! You’re at the craziest part of it now but you will find your footing. Welcome 🙂
Had to share a pic of one of the pups (Pig). That lump near the wrist of my sleeve is his head, lol. Momma’s boy much? 😆
0 -
Believe60:
I am just a few months ahead of you, with a diagnosis last May of Stage IV with 2 bone mets - one in the right pelvis and one in the clivus bone in my skull. A technical glitch prevented me from joining this amazing community until yesterday, but I read many posts over the past few months and learned so much. I had 5 rounds of SBRT to the skull and pelvis at the end of June, and currently take Kisqali 400 mg daily as well as fulvestrant injections once a month. I have scans on Monday and a head MRI on Tuesday to see if the treatment is working. I don't have the knowledge or experience of many of the members here, but if you think I can answer any questions for you, please ask.
0 -
Kittykat - I'm so sorry about the progression to the brain, and that no one bothered to report it after your last scan. Sheesh! They have a serious problem to address. It's so fortunate that your treatment is working on it. Sorry about the ONJ, too.
LivingIVLife- I hope your power has been restored, or at least that you are able to keep warm.
SondraF - we watched White Lotus. It was...quirky...and pretty funny, we thought. I remember we watched the first one and decided we'd watch 'one more' to get a better feel for it, and then one more, and so on.
Mara - I cannot believe someone punched your nephew in the face over anything in a store, let alone a toy! Crazy! I hope they catch the guy.
Kikomoon - I play some video games, too. Some are basically mindless and just distract/relax me. Others are more challenging. I like Hitori, and other puzzle games. I like the Wordle games - recently, I've been playing a 64-word version. Lol I figure a variety of things that keep my mind active in different ways is good.
50sgirl- how thoughtful for your grandson to invite you to lunch. It sounds like you had the perfect arrangement to be comfortable and enjoy your time with him.
Mae - that's pretty funny, the pup crawls up your sleeve?!
Welcome to earlymodern, Believe60, and Eleanora.
Hi to Mel, booboo, Tanya, emac, Candy and everyone else.
My MO appt on Monday was good. The usual results for bloodwork. LFTs and tumor markers still good. It feels good to take a little breath after not even realizing I was holding it. I'm finally on a normal schedule for December - scans one week and MO appt the next - after we come back from our cruise.
We had to cancel our trip to GA next week and postpone our visit to FL (panhandle) until later in the month. The silver lining is that one of my sisters may get to come for a visit when we would have been gone.
Today was laundry day - I don't have the same love for it that Mara does. Lol. My daughter returns from her international travel tomorrow and will take her pup home on Monday. Overall, life at the lake is good.
0 -
Believe - welcome and HUGS! We all role with the punches around here - none of us know what the next bend in the road will lead to - so we support one another through the good times and the bad. It's just nice to know that someone understands.
Kitty - my heart sank when I read your news. There is a lot of incompetence out there - makes me so angry!
Candy - good idea to keep a log of your symptoms. At least the tests were all clear but that doesn't help with an answer.
50sgirl - what a sweet thing for your grandson to do.
I forgot who asked but my knee replacement is 10/18. It may need to get moved back if this rash isn't gone soon. I've had 3 docs follow me along w/trip to urgent care. My internist will likely have me sees dermatologist this week. It's everywhere - right arm, abdomen, back, neck and scalp. It is so very ITCHY!. Have a topical steroid that helps some but at this point I just want a prednisone burst to calm things down. Have no clue where it came from. Nothing has changed in our household. Will see what tomorrow brings. In the meantime, I'm heading to do an Aveeno oatmeal bath.
Waving Hi to all 🙋🏼
0 -
Goldens ~ I hope your rash clears up. What an annoyance, we go through enough already. Thinking of you.
Welcome Eleanora ~ I hope you will drop in and share along the way with us. For support and understanding women. Sending you welcome hugs.
Hi Candy~ Mara~ SeeQ ~
Mae ~ that's freaking adorable. Precious pup. So lucky. Enjoy that baby!
0 -
Mel, thank you for the shout out, Elenora, welcome to our living room, glad to meet you.
Goldens, hoping the rash clears up soon for you.
I am making a basic breakfast again. 1/2 cup black beans, they will be baked in the breville oven, pan cooled down and then brought to my oven burner to cook up 1/4 cup beefless ground, spinach and a sprinkle of cheese, will cook on low with a lid on the pan on no heat. Topping with queso and sour cream with onion, salt and possibly steak seasoning along with wheat bran for boosted fiber.
Planning to attempt a walk to the grocery store but will go along the bus route just in case I get tired, will be using my cane and going slower. I also realized that for getting up purposes, if I need to kneel, don't kneel on the pavement but the grass instead, that should allow me to get up as I have practiced. When I get home, just doing more laundry and making foaming soap liquid from existing liquid soap. 4 pts hot water, 1 pt soap and put into a foaming soap dispenser. Works just as well. I do the same with my dish soap as well.
0 -
Believe and Eleanora- welcome to Mel's living room. We are all here for everyone. I hope you have big pockets because we jump in often with your scans and results. I'm sure you are still in "what the hell just happened " stage but each day will bring a new stage of understanding.
Kittykat- I am so sorry for the added worries the incompetence of the health department has been put on you. It's a slap in the face but hopefully they can get the right treatment to shrink these mets even more!
Mae- the pup up the sleeve is too cute!
Candy- hopefully you will be able to normalize the fever. It's unusual they have tested everything for infection and nothing is showing but again nothing is normal about what we can expect each day.
We still do not have power here. 9 days and counting. We do .have a small generator to keep our food frozen and we have use of microwave and small appliances . We are lucky compared to the heart breaking pictures and stories from parts of Florida.
All around us teams are working away at cutting the fallen trees and wires. Somehow we don't think there is anything organized in the way they are going about this. It is very tiring 😫
I am in anyone's pocket this week for everyone who is going through scans, MRI s and just ordinary bad days.
Thinking of you all!
0 -
grrr, I just wrote a long message and it disappeared. I think sometimes I hit ‘“done” but not”submit” . Picture me banging my head against the wall now.
Goldens, That rash sounds miserable. They need to find a way to resolve the issue quickly. I was the person who asked about your surgery. The 18th is coming fast. It’s hard to believe that it is October 2 already.
Mara, I wonder if your recipe will work for foaming body wash, too. I don’t see why it wouldn’t. I think I will try it. The body wash doesn’t seem to come in the scents that I like best.
Living, Do you have heat? Has it been cold up there? It is nice to have a freezer and small appliances, but being cozy and warm counts, too.
Today I am making and freezing soups for this cool fall weather. I am making chicken noodle, vegetable, beef stew, and corn chowder. I will not freeze the corn chowder because I don’t know how it will do. Instead we will have that today and again as leftovers on Wednesday
I will have sessions 3 thru 7 of WBR treatments this week (mon thru fri) then finish up with 8 thru 10 next week. Mara has been my inspiration and I am thankful for her generous offers of support and information.
My good wishes continue to flow to those of you in the hurricane areas. Hi to everyone. Have a good Sunday.
Hugs and prayers from, Lynne
0 -
Welcome Believe and Eleanora to the living room.
Kitty the neglect of the medical team to not diagnose new brain mets is gut wrenching. Sending support and hugs. Did the ONJ mask any tumor symptoms for you? I found my initial cancer lump myself one month after my first mammogram.
Mae I always look forward to your pictures and you did not disappoint with sleeve puppy!
Mara that's crazy that a customer just punched your nephew. I hope it was all on camera and that he's arrested. I keep reading about your soap making and I really need to try it. it sounds calming. I don't enjoy laundry like you do though, that comes from years of laundry abuse lol. We used to have to hang the clothes outside (even in winter) or go to the laundromat (long hours as a kid dropped off, washing and folding) we also didn't have permanent press so ironing was also a major chore YUK. I came from a large family six kids so you can imagine the bags/baskets of laundry by the weekend.
Living did you get heat yet? I have no idea what the cleanup rules are here either. My neighbors were on their roof yesterday doing repairs but the branches tree debris is piled in front of peoples homes. Mostly not bagged.
Booboo I hope you're enjoying the fall weather and are feeling good.
I'm going to venture out for a short walk. We had to go to lowes to buy a refrigerator. No complaints the one were replacing lasted over 15 years and is still keeping cold just leaking, shelves broken etc. We don't want to wait until we have warm milk.
It's October and so far I had one request to walk the pink walk next weekend. I think I'm going to take a drive to Atlanta instead and visit my granddaughter. She's 8 months pregnant.
Take care all enjoy the rest of your weekend.
Tanya
0 -
Tanya, I did not have a big family to do laundry for. My mother would not let us near the washer or dryer as younger people so she did it. By the time it was the two of us in the condo, I took over. My love of laundry took over after she passed, with only me, it is easy to do. I do like mixing up my powder ingredients.
50's, if the soap already comes in a foaming dispenser than don't thin it out. If it is thicker like a liquid soap from a pump, you can definitely thin it out to the 4 pts hot water, 1 pt liquid soap. Shampoo would work as well. You just need to have a foaming soap dispenser and foaming soap is at the grocery store or Bath and Body works or even a dollar type store as well.
Living, I am glad you have some power through a generator to use a microwave etc, hope it can be brought back on soon for all of you.
I did manage a half hour walk to the store with the cane, I do find that I sometimes get out of sync with the cane and the foot fall but I just readjust and move on. Had to walk another 10 ish minutes for the bus home, was not going to push another 1/2 hour walk. I am not super sure I feel more balanced but it is not bad at all. I would say after I check mail, will bust out my walking poles, for balance, not speed walking and give those a shot in the parking lot, see what balance on both sides looks like.
Foodwise, got some Stuff n such chicken stuffing to help use up my canned chicken, did not want actual celery so got some celery salt to add to it along with a squirt of mustard. Forgot about the sage but I think it will still be good. Will post about that later.
0 -
Worked on the back wall of the beach bar today installing the large beach scene wall stickers, which was more work than I thought but got it done. The photo of me exhausted and sweaty is unflattering but illustrates how I can be immersed in beach vibes by the view, even when it’s fake. Loving it so far.
0
