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My Husband, My Life, My Love, My Family, My Cancer

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  • threetree
    threetree Member Posts: 1,559

    Good morning and thanks to many of you for the much appreciated comments/advice re my freak out yesterday evening over my onc's attempt to call me. Sounded like he thought it was urgent, maybe he's just trying to be "timely"?

    Intolight - Interesting that your onc has called you for all sorts of things from good to bad. Mine has never called me for anything. Yes, I think they know we see the reports (mine does for sure) and they want to "head us off at the pass" so to speak, before thinking anything crazy or off. That's something to consider for sure. As you mentioned, the different words that the radiologists use can be confounding. That is part of my problem with this issue for sure. Really glad to read that you had a good time with your grandkids. I know what you mean about missing those little kid voices! (I don't have any grandchildren, but I love the sound of kids playing and miss it when they stop.)

    Irish - Very good idea to keep my appointment for downsizing and keep my mind busy, and thank you for that. Yes, I agree that these portal messages can be a curse at times, yet I still think they are better than not. Sure hope you get your med dose thing figured out. It sounds like they messed up somewhere. Yes, you are your own best advocate for sure!

    Mara - Thanks so very much for your helpful thoughts. On the advice of all of you, I am going to keep the appointment. Re keeping a song in my head, I usually have the radio on a good part of the day - the oldies "retro radio" station. It really does help keep me sane. When it's on, my mind spends a good deal of time following the music and so it doesn't then go to freaky thoughts and dark places. Like Intolight, you seem to have an onc that calls. Mine never has until now and that's part of my problem. Re your family taking you shopping - it is always hard to work things out comfortably with family. I commend you for not wanting to be a burden to them, but I can also understand them probably not seeing you as such. I hope you get it resolved in a way where you are all on the same page and happy.

    Cookie - You are always so helpful! I spoke to a friend about this and she too is wondering if he isn't just wanting to explain something that isn't a quick few words of commentary that would fit in the MyChart section. Knowing him, he probably also wants to be able to answer any of the many questions I can come up with. I'm thinking he also might just want to be timely and not wait for the appointment next week, since the scan results came in at the end of last week. On the other hand, he usually just adds a quick note about results in MyChart. Well, as you all have suggested, I will just try to stay busy and keep my mind of this for the most part. I just don't want him to call back when my decluttering person is here. Guess I'll just let any messages go to voicemail and deal with it all after the organizer is gone.

  • mara51506
    mara51506 Member Posts: 6,389

    Ugh, so many flies inside today, no idea where they are coming from, killed a lot myself but they are driving me nuts. I will assume they are coming through the hole that is outside, taped up what I could, whacking with my hand, sprayed with wig conditioner and whatever else is needed.

  • shanagirl
    shanagirl Member Posts: 419

    hey everyone! Wow it’s a chatty group here in Mels Livingroom😉I tried getting on this board yesterday but for some reason it was not working. So I went over and visited the Bone Mets thread…

    So @mara51506 Going out for a burger is always good. And wow I’m so glad your landlord had a new split AC!!😊

    I was saddened to learn of @spookiesmom Passing. I hate cancer. RIP spookiesmom.😢🌸

    @intolight & @irishlove I always make myself crazy reading and re-reading everything on my portal my Chart.🙄

    @threetree My Onc NEVER calls me UNLESS IT’S bad NEWS. 🫣

    @sondraf Oh yuk, I hate those stomach bugs. The nausea is awful, but. I almost wish I. Had the big D. I have had the big C since my Verzenio dosage was reduced. I hat. That works than the big D. Has anyone else experienced this?

    @micmel &. @cookie54 Saying HI 👋😊

  • malleemiss251
    malleemiss251 Member Posts: 544

    @mara51506, I would never have thought to use wig spray on flies. We have so many flies in summer here, but in winter it is much better. Thank you for the idea, though.😀

  • micmel
    micmel Member Posts: 10,025
    edited June 28

    I’ve used hair spray on flies. Maybe that’s the same thing? Mara? I am finally going out to dinner tomorrow night with DH. I’m going to force myself to do it. I am in the mood for some seafood. I want a lot of it too. Some crab. Lobster. Oh yeah clams. I’ll take it all please. I’m looking forward to it. Hope I have a good fatigue day. Goodnight everyone.

  • irishlove
    irishlove Member Posts: 562

    Good evening sweet ladies. I hope you are all as pain free as possible, and eating seafood (lol) or whatever special treat makes you happy. Mel, that was a cute post. We will be celebrating our 45th anniversary 4th of July. I suspect it'll be a quiet celebration. An ice cream cake sounds good to me. DH just rec'd his present, a new TV as ours just blew up (not really, just quit). Only 8 years old. Geez, grandparents tv's were 20 plus years old, oh and had tubes. Again, lol.

    I'm so very down thinking about emac, so terribly young to have passed on. I didn't know spookiesmom, but care for her and her family as we all do for each other. Sometimes it's all too much. Heck, most of the time. The MO does not have access to my portal, not sure why, so I can't check his notes. Guess it's because he's a temp.?? The cancer center should have their new facility in our town built, I think by winter. Hmmm, makes you wonder how they are going to staff it.

    Mara, I'm so happy that you will be enjoying a cooler environment and no increase in fees. Mel, enjoy all that wonderful seafood. Love crab cakes and scallops. So relieved that MO made it a point to say not to worry, that it was a timing thing, threetree. Sondraf, hope they get the diff under control quickly. Hi shanagirl, have you had chance to enjoy the boardwalk? I know it's been so darn hot and not feeling well, makes it difficult. I'm 10 minutes from Flagler Beach and haven't been to the beach yet this summer. Hi Illimae and miss mallee and kbl. Positive thoughts for my dear friends and prayers for all that accept them. In your pockets.

  • sunshine99
    sunshine99 Member Posts: 2,723

    threetree, I'm glad you got a clarifying message. My MO (or PCP) has only called with bad news. My MO's nurse has called a few times right after my scans to let me know all was good.

    I'm kind of pissed off right now. I posted on FB about my latest progression. Lots of positive, love you, praying for you, etc., type of responses. Until… The same person who commented on my blog about these miracle cures for Stage IV cancer posted three times on my FB page. One of the cures involved apricots. APRICOTS??? SERIOUSLY??? I deleted her comments, unfriended her and hopefully that will be the end of her unhelpful comments. I had already taken her off my blog distribution list, but forgot we were still FB friends. She was my first college roommate, so she's a "friend" that I actually knew.

    I have a phone appointment in a about 20 minutes with the pharmacist for "patient counseling" for Afinitor. Sounds like it comes with its own set of SEs. Yay!

    It also sounds like I'll be getting a FNA procedure for the omental caking/mesenteric carcinomatosis. From what I've read it's done under conscious sedation. Yay for that.

    Off I go to get ready for the phone appointment. Wish me luck.

    Carol

  • malleemiss251
    malleemiss251 Member Posts: 544

    @sunshine99, you would think that any intelligent person would realise that if apricots were the answer to cancer then: 1. Nobody would have cancer cos we would all be eating apricots and 2. apricots would be more expensive and difficult to get because everybody would be buying them. She didn't happen to mention just how many apricots you would have to eat and how you would deal with the resultant big D, did she? Just wow - advice like that is so irritating. You should not have to deal with stuff like that. In your pocket with support.

  • chicagoan
    chicagoan Member Posts: 1,026

    I think the woman was referring to use of Apricot pits/seeds. Here is an NIH study showing that they inhibited certain types of breast cancer cells. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9325146/

  • cookie54
    cookie54 Member Posts: 805

    sunshine Wow… apricots for all…boom and we're all cured!!! Seriously?? Can't stand that crap! Good move on your part to forget about her and her great advice.Hope your Afinitor consult went well , in your pocket always.

    sf-cakes I'm so glad you got to celebrate your retirement with all of the special people in your life. Sounds like it was just perfect!

    seeq Lake living….love it! Sounds like it's going to be so much fun. I hope you find the perfect shady spot to kick back and enjoy.

    mae Your mountain weather sounds glorious! Hope you feel well today.

    Not sure what's going on today ,it's back to humidity again today. We went to my neighbor's son's wedding last night and it was fun. It was a beautiful outdoor/indoor venue and the weather was beautiful. Was nice to go out and put our troubles aside.

    Hi to all and have a peaceful day.

  • threetree
    threetree Member Posts: 1,559

    The apricot thing is the old thing with the pits. Laetrile, vitamin B15? (Not really a vitamin). I have an old friend who's been living with stage 4 pancreatic cancer since about 2007 and her sister tells me she's doing "vitamin B15" now and really thinks it helps. When she was first diagnosed with what they called an inoperable tumor she did Avemar ( fermented wheat germ), and swears that that shrunk her tumor enough for surgery to happen. She's one who did all the conventional treatment too, so can't really know just what has actually helped, but she is sold on the alternative stuff and truly believes it saved her life so far. Decades ago people here were going to Mexico for Laetrile (apricot pit) treatments, but our government discouraged it and called it quackery. It does seem like if it really worked, we would all know about by now. Same with the Avemar.

  • intolight
    intolight Member Posts: 2,319

    Adding to this conversation…forty-five years ago my dad went to Mexico for cancer treatments. He brought back some nasty black liquid (not Laetrile) but swears it worked. He also drank ocean water and ate almonds. He lived a good thirty years before the cancer came back and eventually took him before I was diagnosed. He never went on conventional treatment although he was three days from surgery to remove his lymph nodes and part of his face when he said no and went to Mexico the first time. But he also had a strong religious faith. This mixed-up treatment world leaves me a bit confused, but I am thankful for the treatment we have so far. I just nod when someone suggests something strange and keep on doing what has worked for me for the past eight years.

  • mara51506
    mara51506 Member Posts: 6,389

    Threetree, glad you have such a good MO.

    Less worried about flies, saw a couple, in the bathroom window. Smashed a couple and then made a trap out of a soda plastic bottle. Cut it in half and turn the top inside out. Mix soda,vinegar, cat food and some dish soap. Flies cannot get out of there and then drown, saw one in there so far. They are not pestering me in the living room so if I am that hot and bothered, can shut the bathroom door if needed.

    I did place a walmart order, was 60 dollars, got old elpaso soft taco bake, some store brand frozen spaghetti and lasagna, sour cream, white milk and perish the thought, fibre one honey clusters. Milk will fill out some of my dry package pasta. Planning to use beans instead of beef since I don't have any ground or beefless ground beef. Looking forward to that. Other than that, making beans and rice for this morning, chopping in croutons as per usual for the ground beef texture and ensuring I eat up the beans faster so they do not go bad, checked on meat pie situation but I do have a couple of packages so no need for that this week.

    I am not planning to go out today, pretty rainy. Split AC almost done but not completely yet, probably next week. I am impatiently waiting. Need to break down some boxes as well. That is about it. Holiday weekend but I normally don't partake of the fireworks. Hopefully the weather improves tomorrow or Monday so people can enjoy fireworks etc.

    Hoping everyone has a good day and pocket duty for anyone who needs me.

  • threetree
    threetree Member Posts: 1,559

    Intolight - Both almonds and apricot pits are associated with cyanide, and then cyanide poisoning of course. I understand that is some of the criticism and problem with Laetrile, i.e. some people wound up with cyanide poisoning and died from it. I have heard that cyanide does kill cancer cells in the lab at least, but that's not the same as people taking it. I think it's the amount. Some foods we eat have some amount of cyanide in them, and it's a good thing, but when it's overdone, it can be deadly.

    I've seen studies too where Avemar (fermented wheat germ) kills cancer cells in the lab, but it's not well known what it does in people.

    Very sorry to hear about what happened to your dad. I can understand his going to Mexico to see just what might help, though. When things get bad, we start reaching for straws and anything that might be out there. I wonder what the black liquid was?

  • candy-678
    candy-678 Member Posts: 4,166

    I posted a couple weeks ago about my long-term disability claim. I got the letter. They are stopping my claim. Said I am no longer "disabled" according to their qualifications. That I could do a desk job. Their letter was very convincing. Mentioned my complaints of fatigue and brain fog, but that there is no medical evidence of cognitive dysfunction. That my arthritic hip does not preclude me from having a desk job. That my doctor mentioned in his notes my use of a cane and my limp, but that does not prevent me from doing some types of "gainful occupation".

    So now I have to send a copy of the letter to Social Security for their records. I am scared that SSD will agree with the findings and I will be made to go back into the workforce.

    For all you out there receiving Disability and that your cancer is stable- - you better watch out. We with Stage 4 are not guaranteed Disability.

    I will let you know what Social Security has to say. I just don't know how I am going to work a 40-hour work week. I am so tired right now.

  • intolight
    intolight Member Posts: 2,319

    @threetree I have no idea what the black liquid was, and I don't think my dad knew either that I can remember. He just took it a spoonful a couple of times a day. I know he also counted out his almonds. He was very diligent with his medicines.

    @candy-678 I am so sorry to read this. That is just wrong. I am sure you have tried everything. Do you have a disability lawyer? I never had one but I heard they help. Of course, I couldn't afford one anyway.

    Happy Fourth of July for our USA friends. We are having company and watching fireworks from our deck. They are celebrating today and we can see the fireworks from the high school here. But we don't set any off as they are illegal in the State of Colorado. It doesn't prevent all our neighbors from setting them off…

  • threetree
    threetree Member Posts: 1,559

    Candy - I agree with Intolight that you might want to contact a lawyer. I work in a social service area where I encounter disabled people on SSDI, and most all of them fare much, much better when a lawyer has been involved. At least have a consultation with one. There is the financial piece of course, but I think disability lawyers are used to that and have ways to work with people about fees. I've heard so many stories about denied claims that were then approved after working with a lawyer. I'm so sorry that this has happened to you, and I wish you nothing but good luck!

  • mara51506
    mara51506 Member Posts: 6,389

    Candy, I am sorry you are being put in a position to have fight for Disability. Have any of those twits deciding ever had cancer being treated with drugs. Stable does not matter when drugs give the bulk of us massive SE and fatigue and whatever else you are facing. I hope there is more doctors or an organization or legal help you can get. How do they know your brain is working. Can you doctors help, maybe legal Aid to fight this.

    In my case, my body is stable but brain isn't really with the bleed in my head being monitored. I would be unable to work.

  • candy-678
    candy-678 Member Posts: 4,166

    I cannot afford a lawyer.

  • illimae
    illimae Member Posts: 5,688

    Candy, I appreciate the “heads up” on disability. Like Mara, brain mets have been a steady issue one way or another, so I think it’s kept me safe from suggesting I go back to work. The nearest job in my very rural area would be retail or food service and at least an hour away, so not really an option at all. Just sent off my disability paperwork to continue benefits through next July, hopefully they just approve it and move on.

  • threetree
    threetree Member Posts: 1,559

    Candy - I agree with Mara that some sort of legal aid should be available. Many lawyers will offer a half hour or even hour of free consultation. You can learn a lot from those. Some areas have free legal clinics once a month or something. You might want to contact your local county bar association to help find no or low cost legal help. I think help is out there, it's just finding it that is the challenge.

  • mara51506
    mara51506 Member Posts: 6,389

    OK, I am sure you want to sit with this a while but there are many legal aid places in many states that are free for low income or disabled people. I am not sure where you are from but encourage you to check online and get on your doctors if more is needed. In your pocket and that is enough of my feedback as well.

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