My Husband, My Life, My Love, My Family, My Cancer
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Cookie, the wait and see game is the same for me, monitoring the bleed in my head, MRI every 3 months to monitor brain and bleed. Brain has been fine for 6 years now. If no change to the bleed, leave it be and keep checking.
I am enjoying washing in both machines at the same time, the new one does not have a spinner but I put it next to the other washer. Other washer just a pain due to stopping and I have to go start it every few minutes. Not getting a new one yet though since the spinner is just fine. Had some funky smelling cloths and clothes that spent too long sitting in the buck that holds dirty stuff, the lint filter had also gone off so emptied and put the stinky stuff in with enzyme cleaner, type I use when wiping out the litter box and vinegar to clean both the smell and then the washer itself then go on to wash the stuff, also need to empty the lint filter every wash as well.
Going shopping with DB at Costco, will pick up the big litter as DB brings it up for me, cannot really get too much more, really need to finish up my food. Opening some beans or lentils, eating up the fettucine and finishing up pizza, mixed pizza in with another pasta I heated up, pretty good. Had to tape my freezer shut as it would not stay closed, works pretty well. Did find a sale on Amazon so will get that and probably stow it under the bed since the cats are always running out of food.
Hoping everyone has a good day, pockets for all who may need me.
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Sf-cakes, thank you. That’s kind of what I got from Dr. Google. I’ll be curious to see what my oncologist friend has to say. I’ll definitely ask my MO when I see her in a couple of weeks.
Once again, I’m thankful to live near the coast in San Diego. Grey skies? No problem. We live in an old house with neither heat nor AC. We use space heaters when we need them, and the heat is never that bad. We have an insulated attic and trees in the front and back yards that shade the house. Our neighbors do run their AC a lot and I understand their utility bills can get expensive.
Intolight, I’m sorry you’re still not feeling well. The slow cooker is a good idea. I go through phases where I use mine a lot and then not at all. Same thing with the air-fryer. Something will sound really good to me, and then it’s disappointing. Oh well…
I’m sorry I’m not mentioning everyone. I do read and appreciate all the posts. I’m writing this on Word so that I can scroll through the posts and respond to them.
Am working on my next blog, titled, “Shucky Darn.” I enjoy working it and reworking it and reworking it again.
I’m avoiding political posts, but mara, I did enjoy yours. Many years ago, I found a sign and I put it into the back window of my car. It read, “RE-ELECT NO ONE!” I got a lot of thumbs up on that one.
Love to all,
Carol
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I've spent the last few months reading everyone's stories here, from their first posts to sometimes their last, sometimes their disappearance, sometimes their ongoing lives. I'm a writer (as we all are here), so I'm truly engaged in reading these stories, especially as my own fate is unfolding. Sometimes these stories are comforting, sometimes hair-raising. All are memorable. I was deeply touched by those we've lost here, a woman whose little dog chased butterflies in her garden, a singer who wrote for a French opera magazine, a wit who rewrote the words to Huey Lewis's "I Want a New Drug," and so many many more. Their lives are remembered here. Mothers and grandmothers and men and single women and lesbians and worried husbands and army veterans and teachers and businesspeople. Young and old. Rich and poor. People from all over the world talking to one another not just about breast cancer research but about their suddenly altered lives. I was amazed to find that some 115 people posting here right now have survived past 5 years, about half of those over 7, a good number over 10. Many people I read about lost their lives after a mighty struggle of 5, 8, 10, 12 years. The numbers here are far better than the reported statistics. And many were lost, cut down, facing much pain and heart-ache, some writing about their final moments here. I have to think that the community you have created here has helped people immensely, whether psychologically or physically or both.
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@tougholdcrow Wow it warms my heart that you took the time to do read about so many people here. This is truly an amazing group which makes each loss tragic to all here. Blessed to know everyone here!
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@tougholdcrow What a beautiful piece of writing, and you totally understand. This site is a place for us to be heard when much of the world really doesn't want to listen. Where else can we leave snippets of our first and last struggles? Our families are too close and weary quickly. But the people here truly care and want to be a positive spot in our negative world.
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tougholdcrow - what an insightful post. Thank you for your time and words.🥰
Our dear Bella turned 14 yesterday. We are in awe because we had 2 of her half-sisters along with her for a while. Both half sisters were taken by hemangiosarcoma (the most common cancer in goldens) one just before turning ten the other just after turning ten. Obviously Ms Bella has different genes for which we are extremely grateful. She is a smaller size golden and has a puppy face so everyone is shocked at her age. She is such a diva - she must have a fresh bowl of water whenever she wants a drink🤣
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Goldens - A very happy birthday to Bella! She does look young. What a wonderful photo. I just want to hug her, and spend an afternoon sitting next to her outside or something. You are very lucky to have her!
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Tougholdcrow, cannot agree more with your remarks, I feel the same, there are people that have impacted my life Rosevalley, Longtermsurvivor (Stephanie Sugars) and of course Zarovka who created the Stage V fitness. It has fallen off some but people will remember that.
Sunshine, AC is expensive, I try to be responsible with mine setting AC at higher temps, living room is still quite cool even being kept at 75 and 70 for sleeping with bedroom door shut. I like moving the air with fans myself. Don't worry if you cannot hit everyone who has commented, I know I unintentionally miss posts myself but it happens.
Goldens, bella is precious.
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@goldensrbest omg, Bella is adorable! I’m a sucker for a golden. I’ve had three and each one was special.
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@goldensrbest Happy 14 th Birthday Bella! Her name fits her for sure, beautiful! I love her puppy face, I want to give her big hugs and kisses. She certainly is a gem and is lucky to have great doggie parents!🎉
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happy birthday Bella! Love to all ! Mae~. How are things?
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Deleted previous posts. Longer way of saying, fridge, too full, bought too much. Throwing excess stuff out of fridge, leaving freezer taped up until I finish eating that, no more shopping. Organizing each. Laundry and chores for today, playing star wars music.
Trying out a nutritional great value bowl, see how it tastes, later eggs, lentils and beefless ground, not sure how I am making it. Other than that, going out with DB was nice, both nephews came and niece, older DB carried in my groceries. Always appreciate that.
Weekend plans include full on house clean, movie watching and that is about it. May also get used to riding the regular bus as well, it is free off peak hours, might as well take advantage. Save paratransit for hospital and other trips.
Hoping everyone has a good day, in pockets for those who need it. I am happier with this post. Need to condense what I am saying, good place to practice this.
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Micmel, I’m ok. DH and I were down with Covid but are up and about the house today. I’ve notified the chemo clinic, they’ll let me know when I can come back. It was a tough 48 hours but I had plenty cold/flu meds. Just resting now.
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Mae-Sorry to hear that. Did you catch it when you traveled to the music festival? Almost everyone I know who has recently traveled or attended a large seminar has come down with it. Hope that you and DH have full and speedy recoveries.
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oh no the dreaded Covid strikes again. What a shame if that’s how you caught it. Who feels like using masks again. I don’t. Glad you’re on the mend.
Hello Mara! Hope everyone else is at least ok! My mouth is bothering me again. Talk about chronic !!!2 -
@chicagoan We picked it up from a neighbor who invited us for dinner, he had been out around the nearby small town for the 4th of July festivities. I noticed him coughing but DH mentioned that he had emphysema, so we thought nothing of it. Fortunately, I have a surprisingly robust immune system considering I’m on chemo.
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Glad to hear it wasn't any worse, Mae.
I've been wondering. Have you all been keeping up with covid vaccines?
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@gailmary I’ve never been vaccinated, I have a life threatening allergy to PEG and Polysorbate 80 (vaccine ingredient). Covid is unpleasant but not too different from a rough round of chemo with fatigue and lack of taste/appetite with two days of sinus trouble, fever/chills and joint pain, just for fun, lol. DH is having a harder time with it, he’s not used to living this way.
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Hello room
@illimae covid has been increasing in our area lots of tourists. I hope you and your dh feel better soon.
Gailmary I didn’t get vaccinated this year. It’s been over a year since last vaccine. What about you?
Mara you have your work cut out for you. I love how you have so much energy. I love a clean house. I barely have the energy. It’s tidy but not clean always.
Mel I hope your mouth sores improve. This month was the absolute worst mouth sores. Just barely, today, starting to feel some improvement. I used tea tree oil. I googled that remedy. The magic mouthwash numbed it but it wasn’t healing/going away.I feel Ike I was cooking all day. Bone broth soup.
take care all
Tanya
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I had Covid two weeks after my mother died and I was down!!!!! I also only had one vaccine and the one i did get made me so sick. I didn’t really want to go through that again. I hope we all stay free from Covid. Amazed me how it flared up in the warmer weather unlike the flu. Although sometimes there is a summer cold people get. It’s crazy. Any cough could be Covid. I can’t have that again. I’ll lose my marbles. Glad you’re doing better.
Tanya they have me dexemethosone spelling? For mouth rinse. It is steroid mouth rinse. It works great. Somedays. It’s better than others but that magic mouth wash never worked one time for me. But this has. You should really give it a try.
Candy~ I was up for my ltd renewal this past week, the company sent me the paper and I filled out all of the information And my doctor coded it and signed it Even though my scans remain stable The cancer is still there and has done extensive damage I made sure to write my limitations, which are many and my need for resting and my lack of going out and fatigue or being able to comprehend daily things quickly. Never once was the word stable mentioned Instead I used terminal cancer and phrases like neuropathy in hands and feet and unbalance issues plus cognitive lapses. My doctor faxed it and it was approved on the spot for another year. I am outraged that you had this happen. I would appeal and make sure I was the one filling out my issues and my medical history and how I live each day! Burns my biscuits that they did that to you. Ive been thinking about you this whole process.3 -
Good morning all. When the pallative care nurse came here the first time she said (paraphrase) I'm use to taking care of people that look/seem worse than you and then said but you look so good. Wellllll…that burned my biscuits Mel, because we all know sitting on a chair and trying to be hospitable and really not complaining, or not being in a wheelchair can get you those absurd comments. I've already gotten a note on the car about not looking disabled. Candy, you are so sweet but you are gonna have to go gorilla on those people. I don't want it to seem like I'm pushing you, but my concern is it's your money, your health and you deserve the benefit. Plus, if they can get away with denying stage 4 people, they'll continue trying to use that ruse on others.
Illimae, I'm sorry you guys are dealing with covid again. Docs pushing for more vaccines, but pharmacist said don't do it. I can tell you they won't do the jab anywhere but my arms and I have lymphaedema and it makes it much worse. So I had to accept the inital jab in arm and the 2nd. No more for either of us.
Goldensbest, happy birthday to your sweet Bella. Hope mommy gives you extra treats.. Mara, do you have any fish dishes receipes? It would have to be mild seasoning. I'm always hungry and admire your hard work on making meals.
Hi all, in your pockets for scans and life, in general.
I've been up all night. First I just couldn't fall asleep (even with sleep aides) and then I started scrolling the local humane society page of cats. My beloved Booty is still missing. I found a rather poor picture of a cat named Fiona but the picture looks like Booty, but since the cats in a carrier, it's hard to tell for sure. Now I'm waiting for them to open and get my booty over there. I worry about her being euthanized. I had filed a missing report and visited 3 times. Even spoke to the cat people. Fingers crossed it's her. Just gotta stay awake 4 more hours.
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Mae, I am sorry you and your DH are dealing with CoVid, glad that you are resting and making the SE of it feel better, may it go away soon.
Irishlove, I mostly eat frozen battered cod but this youtube recipe is good too. I have made it without the plantains and serve with white rice. You can season as you will if the suggestions in the video are too much. When I have the Cod, I am usually having rice and some beans, I am unsure what veggies you can do on the side, but any of them can be served atop the rice. Serve with whatever veggies you may wish to. If the pan grease is too much, put the fish on top of a paper towel to allow it to soak through. If you like other fish, there are recipes. If you are able to have battered cod, you can get them in the frozen section and still serve rice and veggies with, season everything and if you want flavoured rice, cook in a broth whether it is chicken or beef broth, milder than seasoning but does give good flavour.
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Did not sleep great last night but that is OK, started laundry early, lots of cloths to clean. Planning a hair trim and wash of the head, the cradle cap or dermatitis has not returned. I use a baby shampoo on my head and vacillate between vaseline, Glaxal base and Aquafor. Still brushing both head and face with the cradle cap, skin looks pretty good.
Loving the new portable washer, nice to be able to run a 15 min cycle instead of it starting and stopping all the time and holds just a fraction less than the portable. Planning more basic breakfast, going to open a can of lentils and black beans. Chop in fibre one cereal to the black beans to give a more ground beef texture. Probably 1/4 cup of the lentils, black beans and put a bit of shredded cheese. Add some precooked mexican rice and a dollop of sour cream. I also have chips. The lentils, black beans and cheese are microwaved for 2.5 minutes under a silicone lid. Season with garlic, taco sauce and salt, not too heavy since I am having the rice which is already seasoned. Eggs will follow later on. Not sure what I will do with those yet.
Other than that, nothing too much on the agenda other than continuing to break down boxes, got too much food from Amazon, slowing my roll on all of that, fridge is 90 per cent organized, keeping freezer door taped shut until I start eating through the freezer goods and pasta going forward will be hard pasta or pasta packages and not the frozen stuff, have to figure out that aspect of where I am storing frozen beefless ground if I have more than one, still love the frozen meat pies or mini pot pies which are good as well.
I am hoping everyone has a good day and in pockets for all including my own, want to clean the floor with the robot vac, have to remove stuff from under the couch, wearing some foot mops to pick up the dust and going to mop the entire apartment with the vileda spray mop I got. I use an enzyme and bit of vinegar and water. I have also use a bit of the litter deodorizer which has a lovely smell by sprinkling on the floor and mopped that up as well leaving a nice clean scent. I will just break all the stuff down in small amounts with a rest in between and not worry if some of it creeps into tomorrow.
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Mel- "Burned my biscuits" I have not heard that before!! Love it!!! I am glad you got approved for another year. Yeah, my whole LTD thing was a bunch of sh#$. I am not going to appeal it though. I do not have the money for an attorney, and their insurance company has attorneys (plural, I am sure). I went to my PCP yesterday for my 4-month follow up (he wants me to come in every 4 months). He asked about the LTD. I got him caught up on the saga. He shook his head and said, "why did they ask for my opinion then" and "that was a waste of my time". I agreed that it wasted my MO's time too, and my time. Thankfully, it was a small amount of money each month for the LTD. The SSD is more my concern, as that is what I live on. If it was SSD I would have fought it.
Covid issue- I heard the latest strain is more the stomach illness- nausea and diarrhea. I don't know. My sister and her family went to an indoor July 4 activity with 60 people in attendance and then they got sick- first her husband, then her, then her father-in-law. All over the course of a week. Headaches and diarrhea. Was it Covid?? Who knows. They did not test. But it was over a week, so it doesn't seem like food poisoning or something like that.
I have not had a recent Covid vaccine. I checked my records, and the last time I had the vaccine was Jan 2023 (is that right?!). Then I had Covid December 2023. I did not get a vaccine after I recovered from Covid. I guess I will get a vaccine this Fall, with my flu shot. I have not been masking the last 3 months. I hate to think of putting masks back on with this heat!!! I don't know, I am tired of worrying about it.
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Irish Well that was quite the annoying comment for sure! I feel like a medical professional should know better.LOL loved the burned my biscuits too. Fingers crossed that it's Booty and you can bring her back home.
Mara I picture your apartment to be sparkling clean and smelling like a breath of fresh air. Love your energy.
Yep Covid is around unfortunately! I have a couple people in my family who have come down with it the last two weeks. I haven't had a vaccine since last year, I'm so tired of putting crap in my body . Sounds silly I know but sometimes I feel like I'm always getting a shot or some type of meds. Maybe this Fall I will get it
Mae Hope you and DH are on the quick path of recovery.
mel I hope your caught your mouth issue early and you get quick relief.
Tonya Sorry your mouth is slow healing . Hoping for a better week ahead.
Candy Yea that is a shame it was a waste of time but you had to try. Glad SSD is fine was definitely a scary thought to possibly return to work with SE. I'm afraid to let my Radiology license go in fear that you never know what can happen. Although I have to complete 24 credits before January to maintain it and my brain is not up for all the reading that's involved…we'll see.
Swamy day here..clearing later before the extreme heat returns! Hi to all and wishing you a peaceful day and restful night.
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Cookie, good luck with all the reading, you can do it.
Candy, glad the SSD is still intact and yeah, sometimes I still feel LTD places are about as smart as a bucket of apples but glad the SSD is enough for you to live on.
Tanya, in your pocket hoping for you to feel better.
Mae, sorry you got sick but hoping for a quick recovery for you both.
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Well, decided that I would put some Star Wars music on as I love the music even better than the movies. Return of the Jedi sound track is on now. Helps me keep motivated to get things done.
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Mara you crack me up. I can just see you bopping around the house with your mop slippers and spray to the Star Wars sound track. So cute.
Mel I’m glad your disability went easily. I don’t know why this has become a thing now with stage 4. I do notice that some providers try to minimize what we feel/report with their own take on how we look or our ages. Ridiculous. They do it with my husband bc he’s 74 so they always remark how healthy he looks. But he was poisoned in Vietnam war from the chemical weapons so his injuries are internal.
Irishlove I hope that it’s Booty!!!
I have a pet scan Tuesday.
Mel my insurance wouldn’t cover the “mugard” mouthwash. The pharmacist called and said it’s $79. Per bottle if I order 5 at a time I could get that deal ($400). I declined and got the magic stuff. I’ll try the brand that you suggested and hope it’s covered for the $5. Copay.Have a good day all.
Tanya
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"Burned my biscuits" is the funniest thing I've heard in a long time. It's perfect!
Not much else going on. DH wanted to ride the train from San Diego to San Juan Capistrano and then ride his bike back home. Apparently the 6 am train was booked (no room for bikes) so he took the 4:10 am train. Yeah, he's crazy. I tracked him moving north for a while, then lost him. It looks like he's heading south now and should be home by about 11 am. The SJC train station is about 65 miles north of us and the ride from Old Town San Diego is around an hour if he goes straight through. He loves this kind of stuff.
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Tanya- When you said "providers try to minimize what we feel/report"… so true. I think that played a part in my LTD denial. True, I myself minimize my side effects when talking to my docs, but so do my doctors when they chart on me. They noted in their patient portal notes that "her GI side effects and fatigue are manageable". The LTD folks jumped on that.
Yesterday with my PCP appointment, my doc said he would order labs to evaluate my fatigue- - B12 level, iron, thyroid function. I think mainly the fatigue is from the Lynparza (stated side effect of fatigue in the side effects list) and from being on these meds (first Ibrance then Lynparza) for almost 7 years. We can check those labs, but when they come back normal then they will chart that. More ammo against my complaint of fatigue. See, unless you are a cancer patient and going thru it yourself you cannot really understand. Fatigue is subjective. But I know it is real when I hit that brick wall during the day, or when my thoughts are elusive and I feel the brain fog coming in.
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