My Husband, My Life, My Love, My Family, My Cancer
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Mara, the phrase "smart as a bucket of apples" also cracked me up! In addition to the "burns my biscuits" phrase, you all are an excellent source for new hilarious idioms! I do say the phrase, "rats, cats, and bats" when I'm trying not to curse, but sometimes the good old f-word just works best.
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Tanya and Mel - Re your mouth sores, I don't have anything that sounds as bad as what either of you have, but since these drugs, I do have a more sensitive mouth overall with an occasional sore spot here and there. The two things that have helped me most are:
The toothpaste has Xylitol that does seem to help. My dentist told me about it and he said that his patients with mouth problems/sensitivities told him about it, and he recommends it now. It's actually a bit more costly than regular toothpaste, but not as pricey as some of things you've mentioned. I actually prefer my regular toothpaste, but this is far better for my mouth since the drugs.
This has Aloe and has been a big help to me with my mouth for years - even before cancer. The Aloe really seems to do a lot. Like the toothpaste, it's a bit pricier than normal mouthwash, but not as high as the things you were talking about.
I used to be able to get the mouthwash at a couple of stores, but now I can't get either of these items anywhere but Amazon. Whether either of these will help either of you, I wouldn't know of course, but thought I'd put this info out there, as just a possibility for one more tool in the toolbox.
I also eat about a good half cup of fresh sauerkraut daily (can't get it at 98% of grocery stores - have to go to organic/natural foods stores); that has natural probiotics. The kind that comes in a jar and has to be kept in the fridge (not Bubbies). It does a lot for skin/body tissue in general, and I can't help but think it does good things for my mouth tissue too.
Just some ideas for whatever they're worth, along with hope that you both find something that really does the job, so you can stop having all these problems!
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This cancer crap continues to bombard us. May we all have just one day of peace🙏🏻
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Tanya, I get how frustrating it is for your DH and how good he looks when it does not tell people how he is on the inside. On the rare occasion I take the normal bus, I sit up front as I need to get off at the front. Apparently my cane is not enough to show I am disabled and have had people ask what my issue is for me to sit up front. I usually say not your business but other times I give them the grim diagnosis and let their mouths drop. I rarely do that but it is not their job to ask. The driver can question it but that is the only person who needs to know. Thankfully that does not happen on the regular bus.
I opened beans and lentils at the same time, both meals featured big amounts of both and were quite good, did pull out a frozen fettucine meal at supper, added some lentils, beans, sour cream seasoning and a bit of mayo and both meals today were yummy.
I did spend parts of the day doing the mop and sock mop thing, they really do hold onto the dust or fur that moves around. The most fun I had today was watching the ghostbusters movies, 1, 2, the 2016 movie with Melissa McCarthy and the recent Ghostbusters Afterlife and Ghostbusters Frozen Empire. I also bought them to stream whenever on prime video as well. They were on for cheap.
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Sfcakes, Just a more polite way to say something or some is stupid. Kind of like, that person or group is as sharp as a marble or if you and I agree, we are both wrong. I like that kind of stuff.
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I am so sad that shannen Dougherty has died from MBC. She’s been such a fighter. Ugh. This damn disease. I feel so sad. She did do well at first! I hate you cancer !
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It is garbage and recycle day, several trips will be taken to get everything out. Saves my energy that way.
Doing Laundry and general cleaning, sock mops replace slippers, pick up stuff even when not meaning too, floor mop too. Itemizing fridge and freezer, making list of what items are stored, how many of each item and not be overly full. Helps me stay organized. Pantry pastas and rice make sense, have more space for that. Organizing clothes, found hangers that are vertical and I can hang a ton of clothes behind the bedroom door. Must go through clothes as I do not wear many of them anymore, just leggings, tshirts and hoodies in winter.
Doing some budget boosting TV
We are heating up again, have another heat warning which is no surprise but that is fine. Planning to book some Paratransit trips this week for mall walking etc. Tues, have an MRI and I booked a trip home after a little later so thinking that I may get to walk around the hospital a bit afterward since my appointment is 830 am. Planning Paratransit trips at least once or twice a week. Mostly for walks in mall but could also replace Walmart deliveries so as not to buy too much stuff. Double duty. Cost less than deliveries.
Planning to find a way to use the kraft dinner powdered cheese either as a seasoning or make up a cheese sauce, need to find a scaled down way of doing that wear I store powder in air tight container, using the pasta for another recipe is easy enough to do. I will figure it out, even if the cheese is just a seasoning. Going to have eggs mixed with beans and lentils. Cooking eggs in my egg cookers at the same time and may use mini grill on the beefless ground as well, give different texture but have to be careful not to burn it to death.
I am hoping everyone has a great day, in pockets for appointments or scans coming up as always. Sending my love to all.
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Wow, condolences going out to her family and friends in real life and fans who followed her cancer. She did put up a long fight as most of us try to do but I am sorry it eventually took her. Brave woman and may she rest in peace and no more pain.
Mel, I hate the cancer taking our people and family as well. You just never know when something stops working and really can never consider it gone, just invisible.
One thing I wish publications announcing deaths like this is stop saying she lost her battle. It implies she did not do enough to stay alive, at least it feels that way to me. I know in reality it is not meant that way, just wishing it could be worded slightly differently like, she fought hard for many years but unfortunately has died. Leave the words lost the battle out of it. Just my take, again, I know it is not meant to say they think she did not fight hard enough but hits me that way whenever I see lost their battle. Sad anyway.
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AH the old onc trick of ordering a range of labs when you complain about fatigue in order to looked like they have control over that. Look, in winter my B12 goes wonky every year, or vit D, thr latest was Folic Acid which meant another pill. I get my thyroid tested quarterly too. Meanwhile the anti depressant to help me sleep means I can't wake up and thr lymphadema means I get tired lugging my leg around and thats before we get to the actual chemo. I know they want us to have quality of life and live like its a drug commercial, but its not happening. Frankly lets fix whats wrong then worry if I've got energy! Also, I stopped taking the folic acid a few weeks ago when the c diff popped up because I couldn't deal with one more pill on a daily basis. Not sure if they've noticed yet!
Had a massive craving for hot fried food show up last night (onion rings) but was watching my cooking show tonight and oh man hot spring rolls! Sent hubs around the corner to the Chinese for two and they were super hot, homemade, and crispy but not greasy. Just perfect (maybe a bit salty but that could be my wonky palate). I may score those onion rings Monday after chemo and a super super long day of tests and treatment.
Covid I think I had 6 vaccines and then I'd finally had enough and figure ill get it with flu shot and call it good. I'll take care to sanitize hands and mask up on our trip, though. I'd prefer not to have a family party, and my counts are strong, but I'm not sure how mom will pass that off to everyone, some tricky relationships in there. Small enough family that we could maybe do just a home visit rather than a party. My cousins are all too boring anyway and my siblings aren't near.
Otherwise trucking along just bored even with things to do.
Sunday Edit - Ohhhh I am crushed CRUSHED by Shannen Doherty passing. Catching up on her fight and seeing her still traveling late last year, starting a podcast, it really made me feel hopeful, even after she got the brain mets. I agree with you Mara about the whole 'lost her fight' - hell, she was living it up to the maxx this last year with that big trip to Italy and still fighting her ex-husband over medical payments or whatever. She was a fighter in a lot of ways, but she never lost to MBC. Brenda Walsh 4 ever!
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I immediately learned why I could not work another job. Dropped a dozen eggs, that is not the bad part. Could not for the life of me get the mop part attached. I cried, swore and all for about 5 mins. Stopped and decided to attached two of the mop pads with elastic and it works the same, will put in the washer and wash elastics by hand and keep them close by. Don't need the frustration and my SIL gave me tons of mop pads.
I do wish my first resort to frustration is to cry. I don't spend long crying but it should not be a thing at all. I did get up most of the mess from the dropped eggs but will vacuum the shells later, floor a little sticky but I will attend to that later. Thankfully the two hash browns and two eggs came out fine, salted, mayo and ketchup is good for me.
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I’m pissed! I can’t believe Shannen is dead, her latest podcast was less than 3 weeks ago. Her disease mirrored mine in several ways, although I was ahead of her. From being stage 4 at a young age, to having brain mets to getting great results from a new chemo (Enhertu). What the hell just happened?! Did it stop working and cancer took over that quickly? Did it spread somewhere else and was not treatable? WTF?!
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I have similar questions, illimae, was just wondering how she was doing earlier this week.
And I agree with what others said, she definitely didn't "lose the battle", cancer killed her.
I hate this disease.
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I feel like I've been kicked in the gut with the news of Shannen. Her last post was SO recent. RIP Shannen. And, as others have said, she didn't LOSE her fight. Way to shift the blame, right?
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One thing that I think Shannen had going in her favour was a fierce attitude. It could sometimes cause co stars to complain about her back in the day but that fierce attitude helped a lot during her 9 years with cancer to get through all the treatment and then to have to do it again when it came back. Until a massive educational campaign goes on, lost the battle will continue to be said. Again, I know it is not meant that way but feels to me like someone saying she did not fight hard enough.
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Holy cow, it is very hot, took first of 3 bags of garbage outside. Used a cane and I made it but glad I am taking 30 minute breaks in between, two more bags to take out and cannot skip this week. Then recycle as well. Sweating buckets so the breaks are a necessity. Going to have some milk and head out for the second trip. Can't skip garbage day again. Brain telling me I cannot do the garbage, too weak to do it so telling myself I have to and can do it. No neighbours around to help. If I get this batch out, can fine tune my waste management system so bags are not so heavy next time. Anyway, bag two going out now.
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I was lucky, was very tired trying to carry out my garbage, the 2nd bag of it. Panting and sweating but my kind neighbour from downstairs took the second bag out and then followed me home to grab the third bag. I appreciate neighbours and how they help. But I need to do garbage a different way in future to work for me and get lighter bags to carry out. We will see. Ordered mcdonalds for now and will figure stuff out later.
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Mara, I needed a plan for my daughter and her trash. And she only had to go about 50 feet out the door. What worked best 2as to take it out daily. Habitually.
Would it work to at least take some out EVERY tme you leave the building? Smaller bags? How often is that?
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gailmary, thank you for commenting, no daily garbage storage on site. I will make sure to keep bags lighter and not skip garbage day again, that put me behind. It will be OK, I can usually solve a problem pretty well. Perhaps start working out with said bags so taking out is not an issue.
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I am late commenting about the loss of Shannen Doherty. I did not get on here as much yesterday as some days. When I heard the news it was sobering. She was diagnosed in 2015, right? The report said 2015, with reoccurrence in 2017, and something about 2023. I do not keep up with her blogs. Anyway, if it was Stage 4 since 2015 that is 9 years MBC. I am at 7 years this Fall. I know mine is stable, and I am only on 2nd line therapy, and mine is not in the brain, but I do have bone and liver. It is just sobering to hear of someone else dying of this disease. Even though each case is individualized we all still have the same disease- Stage 4 MBC. We all have that in common. And when someone passes it make me think how serious my condition really is. Oh my gosh, I have terminal cancer. I cannot think too long on it or I start to get panicky. I am scared of going downhill. I am a Christian, but I am scared of death, the actual dying.
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Greetings, all. I am not sure of the details of Shannen Doherty's case, myself, but I think she was diagnosed more recently with Stage IV after having some trouble with tamoxifen. Does anyone know any more? My sense was that she withheld some details of her disease, like what the experimental cure was that she used near the end.
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Morning, Sad to hear about another beautiful soul passing from cancer. I did not follow here closely so I did just read up on her most recent post. I wonder if she possibly developed a a fatal blood clot like a pulmonary embolism? Sometimes we forget the side effects can be deadly at times. Agree I despise the quote lost her battle, I left specific instructions as to NOT put that in my obit. May she rest in peace.
mara How about a trash compactor? I don't know if you have room in your apartment for that. Glad to hear you have nice neighbors that are willing to help . How about a youngster in the building. maybe they would be willing to make a couple of bucks and help? Perhaps not all the time because I know you like to keep moving. Maybe have a cell number available if it's a bad day you can get some help.
sondraf In your pocket today for treatments, hope you feel well enough to score those onion rings!
Thinking of all here, praying for our strength daily.
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Cookie, I did see a couple of trash compactors, very expensive for me but good idea. There is a manual one so can look into that and what is involved.
Candy, although hearing about others passing with cancer is sad for me, I find that for myself, I cannot allow myself to give too much thought to my own situation. In the back of my head, I know that I am terminal, I have DB and SIL who I don't think they think I will die anytime soon. I don't bother to remind them. I am just going to keep getting MRI, CT and echo. Dr app't every couple of months and my brain has learned to shut the cancer worry down for me. I do worry alot about everyday things so I think my brain has just learned to put cancer in the back ground. I am an anxious person as well so have to really work on internal dialogue to send worrying thoughts away or mentally play a song to distract. Otherwise the internal head bleed would drive me insane along with fear of brain mets or further loss of balance.
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Good morning. The news I read on Shannon said she was dxd with BC in 2015 and went into remission two years later. It returned as stage IV in 2020, later metastasized to the brain and she had brain surgery in 2023. I do not know what the new approach was she tried after that. At some point she did publicly say she would need cancer treatment for the rest of her life… that is the message the public needs to hear about stage IV. It is true we are all different, but it is always sobering to read when one of our own passes.
Candy, I relate to your fear. A Christian is not immune to death or the fear of death, we just have a special hope about the other side of death, but somehow I am tiring of the fight. NOT giving up, just fatigued after eight years. I have to remember that at some point we all are going to die and this is probably going to be my way.
It is hot here in CO as it is in most places, an annual occurance here, but hopefully today should be our last day of over 90° weather for awhile. I will hunker down with my mini AC unit and think cooling thoughts. For me that means I won't be crocheting a blanket!
Mara, I love reading your posts. It is like a morning chat with a friend over a cup of coffee.
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Thanks everyone. On my way to Manhattan, hoping to get some cheap tickets for a broadway show. Singing is good for the soul, yeah?
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@intolight That is also what I understand from Shannen Doherty’s BC timeline. I’ll only add that according to some of her statements and the few podcasts that I’ve listened to, she also had a most recent biopsy that showed a change, which she stated “gave her more options”. With her being ER+ previously, I take it that she was now considered HER low. She mentioned a new miracle drug for her brain mets, I think she was referring to Enhertu.
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Enhertu has some life threatening side effects as my onc warned me at our last chat as that would be my next line if Taxol doesnt cut it, especially with lung inflammation and lack of studies about women previously getting pneumonitis and then going on it. Mae, you are doing well on it as are some others I know, but I am hoping to keep that one at bay a little longer if possible :) Perhaps she had challenges with that drug,who knows.
Another 12 hour H day today, lord was that tough. Brain MRI (a just in case as per MO, i have no symptoms, pre trip), bloods, lymph clinic, infusion and oh for fun because my K is low again, as much of a 3 hour bag as they could get in me. They finally kicked me out at 630 pm (I agreed to stay for an extra hour of drip cause i mean lets do that rather than sit in traffic) because I was the last one there and the nurses wanted to go home! My dumb GP received the prescription for my custom compression garments but then didnt check some boxes to send it to pharmacy so yeah well now I dont have them. Clinic realised I am a private patient and I told them insurance would pay for two sets a year so they are going to order them direct for me and hopefully they show up before we go. Im so SO annoyed as I was looking forward to this. I did get compression therapy with the giant boot today though, so that was nice, and this way she can make the slight sizing change she wanted to that the GP wasnt going to allow, so Ill have two sets in the end by August :)
I try not to compare timelines and diagnoses because we are all so individual. Whatever makes up my body chemistry just doesnt like X or Y and thats been a problem this year. My body may prefer Z that others dont like or I may never find an existing solution, who knows. I do wish I could walk like a normal person,though, that would honestly make all of this so so much easier to bear.
Warm and gentle rain here tonight, looks like two days of 80F later this week though! Ive got to try and eat more (anything really) this week and be on top of my K supplements cause this yo yo K things gotta stop, not good for my heart.
Everyone enduring actual real sweaty heat take care of yourselves and keep on enjoying summer!
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@intolight I read a similar article as well. Still too bad for someone else to lose their life though.
As far as being afraid of death, none of us know how it comes about. I don't have a set belief, but if I had the mental power to do so and lucky enough to be in hospice, I would imagine all the people and pets I lost meeting me and hope my mind could sustain that for me. At worst, I really think it would be like falling asleep and what follows after is only known to people who pass on. I know I would want DB and SIL there if I went first.
Well, I got let go from my nursing services because I am not sick overall, no falls, longterm digestive issues or anything else. Then today, got a call from a health care coordinator wanting to come next Thursday, it is in the morning so it won't interfere with movie night. The coordinator wants to see if there are any services I need. I don't think there are but will hear her out.
Decided to make mexican rice, will mix up with beefless ground, chop in some beans and shred cheese, warm it up. Thinking the mexican rice will probably do more than one meal. Looking forward to it. I also have an option to take the cheese out of one of the soft taco dinner kits or can take the cheese seasoning from one of my KD bowls and use it in the mix and add taco and sour cream to all of it.. I will see.
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While I am also a Christian (Catholic to be exact which has all these crazy rules about death), I will echo Will Rogers - if there are no dogs in heaven, then I want to go where the dogs are!
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Goldens, I believe it can be anything we need it to be. I am not afraid of death, just the way it would happen. You will have dogs wherever you wind up.
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when my DH had bypass surgery my son asked me if I was afraid to die. I told him I wasn’t afraid to be dead but was afraid it would be icky and hurt. I’m not worried about afterwards.
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