My Husband, My Life, My Love, My Family, My Cancer
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Mae - great photos! The area of Texas you are in reminds me a lot of northern Arizona where I grew up. It's been years since I saw a javelina!
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Hi, Runor!! You have been missed. So glad to see you back
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welcome My Shadow~ don't be a lurker , come join our special group that honestly cares for each other. This living room is a special place for me at least. For me to let go my worst fears and cry it all out. I hope you will feel welcome 💐
Tonight was rough. I ate a small dinner, the second I was finished I knew something wasn't right with my stomach. It blew up like a blueberry girl on willie wonka. Gas pains to stop a train. I was in hell. Serious pain. It then hit me ive been so worried about my mouth that I've been taking added medication for my mouth pain. Constipation !!!!!!!!!! I knew that second. I was in for a long night. I swear it's like giving birth. Horrible feeling. so ladies keep an eye on that stuff you don't want to battle the bowl like I just did. Ugh! I need a rest. Now.
Yes good to see our Runor. Think of you often.
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Good to meet you Myshadow, I was having neulasta, but in my belly, so I don't think it was that, but after they put my port in my shoulder was really sore for some reason, I will see my gp this week and see what he says, I'm hoping that some pt will give me some relief.
Great pics Mae, and Runor, hi stranger, how have you been since the fires and has all that rain caused you any problems.
Elderberry, I haven't been having anything until a week ago, the pneumonitis really knocked me around, I was on antibiotics for 2 months and had some progression in the meantime, I started Halaven on the 19th, hopefully it will kick these new mets to the kerb.
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Had my scan today so I am a little late to get you all to add me to your pockets, although the scanxiety with waiting is real and present. I have my Zometa infusion next week. Myshadow, I read this thread weekly and pray for you all though I don't respond much either.
I have had a "cold shoulder" diagnosis. It is painful but with PT went away on its own. I remember being in pain when I had one of my scans and the technician was great allowing me to leave my arm at my side instead of keeping it above my head. Just ask.
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Intolight- in your pocket for scanxiety waiting game, it’s the worst.
Myshadow- hello nice to meet you!
Mel- I have your problem every three weeks on my second week of Xeloda. My off week is the opposite problem
Mt first week on Xeloda I am regular. It’s like a not fun game how to balance. I eat prunes and put miralax in my water that second week but always toolate. Hurts to sit down and yes, need a rest after. 0 -
Thanks everyone for the welcome- I’ll try to be more active and not fade back into the woodwork. I’m kind of an introvert though.
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Intolight - yes I do remember not being able to raise my arm above my head. I could get it to about a 90 degree angle. It did eventually resolve after gentle stretching and applying heat. Now I’m more vigilant about stretching and being more active even when not feeling well.
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Runor,
SO good to see you. I, too, have been thinking of you and hoping you are not getting hit too hard with the crazy weather. It seems like your area keeps getting hit. Hoping your farm is surviving it all.
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Myshadow, welcome! Funny, when I saw the signature line info from your post, I briefly thought it was mine and had to look again. Looks like we’ve got a lot in common. Feel free to grab a seat and hang out.
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Kittykat- I hope the PT works for you. See what your GP thinks too.
Runor- Hi. How are you?
Myshadow- Welcome.
IntoLight- When will you find out about your scan? Pocket duty for you.
So yesterday was a long day with scans, bloods, and MO. Pretty good news. I cannot see my scan results yet in the portal (checked again this morning) but MO said there was a decrease in the size of the liver mets. She said "small decreases" but decreases all the same. When I can see the report myself I can compare the sizes from last time to this time and see just how much the decreases were. She asked again if I thought about the Y90 procedure. I said if the Lynparza was working then I want to continue that for now.
There was an interesting finding. Multiple lung nodules in the right lung. MO not convinced it is cancer. Doing another CT in 8 weeks to monitor. I am trying not to get anxious. Could be something other than cancer. But I have not been sick-- no fever, no cough, no illness of any kind. So.... who knows.
My WBC were at the best in 4 years !!!! WBC 3.1-- still low, but much better than usual. ANC was 2200 (2.2) !!!! Wow !!! So the Lynparza is not hitting the white counts as bad as the Ibrance did. Hemoglobin was stable at 9.6--- low but stable.
So overall a good report.
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Candy, so happy to hear that Lynparza seems to be working for you.
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Candy - glad new drug regimen is working!
Myshadow - welcome to Mel’s living room. Great friendship within🥰
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May I whine here for just a minute? It's not really a "Steam Room for Anger" type of post, but here it is.
I'm waiting the results of my PIK3 CA mutation test - along with a bunch of other tests that were run. The main one is the PIK3 CA. My concern is that when reading the SEs of Piqray, they can be pretty nasty. I know I'm jumping ahead of myself here, but am just thinking about the possibilities.
So the issue is, I was talking with my sister yesterday, whom I love dearly and she loves me dearly. I was telling her about the test and my "fears" about taking Piqray. She asked about the specific SEs and I told her about the nausea and diarrhea. Her comment was something along the lines, "Lucky you. You'll lose weight."
I know she is obsessed with her weight and always has been. We could both lose about 10 pounds and not be underweight, but neither of us is significantly overweight. I know why she made that comment, but then again, I think, "Why would you say that to me?" I'd rather be heavier and alive than thin and dead.
I think I really need to say something to her. We're going to be together at Thanksgiving for a couple of days. We have a good relationship, but I somehow need to find the right words to let her know that her comment was insensitive. I'm not exactly hurt by it, just kind of stunned. I know she wouldn't hurt me for the world, but still...
I'd appreciate your thoughts. Again, I know she loves me dearly.
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sunshine, after the massive eye roll, I would reply with something like… I know it’s not your intention to sound rude or insensitive but nothing about cancer is lucky and those comments are not helpful. Then, I’d move on to an unrelated topic of conversation.
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Thank you, mae! It's funny, because she called me just as I was posting my comment. We talked about other stuff, but I didn't mention her comment. I think I'll wait until we're face to face. One thing I imagine myself saying was, "Please don't comment about my weight."
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Candy- happy to hear of the good results on your new treatment. A small decrease is better than the other way!
My shadow- welcome to Mels living room. It is a comfortable place to rant, talk or just find peace.
Sunshine- Mae has said it exactly how it should be said. Express you know she wasn't trying to be hurtful but.....
Mel- I hope you are feeling better. How is your mouth after all these meds ?
Mara- wanted to let you know that PEI has just put a moratorium on renovictions for 2 years. Apparently it is happening all over where people are being told to leave when they have no where to go so the government put a stop to it. It can only happen where the residence is deemed unsafe.
I had bloodwork today and will speak to my MO this afternoon by phone for the results. Still haven't received a date for my next scans.
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LivingIVlife, "renovictions" is a good one! I hadn't heard that one before.
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Mae- forgot to tell you that Jaws is on TV here like a marathon of Jaws and Jaws2 . I will probably watch once.
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LivingIVlife, awesome! There was a jawsathon on TV a couple weeks ago. I watched 1-4 and recorded them to watch again.
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Sunshine- I think you have a right to be miffed. I would mention it to her when you feel the time is right. People do not always mean what they say and how they say it, but they need to be aware of how it makes us feel.
Do what I say and not what I do---- I let people's words bother me all the time and I do not mention it to them. I just stew.
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Living, thank you for the info. Have not heard anything for a bit, trying to fill out a T2 form that says I don't want to move but there are things that pertain to the landlord which I do not have the information for. Going to have to get my older brother to help me out. Still trying to figure out the e transfer because my bank needs a security question. Will ask him about that as well.
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Sunshine, I think I'd say - "I wanted to talk to you about the diarrhea side effect. I just wanted to let you know, that for cancer patients it can result in hospitalization and even death. So that's why I really worry about it. Also, our oncologists get worried if we lose weight. Weight loss is often assocationed witn uncontrolled cancer and end of life. I know you made that comment casually but I wanted to let you know that these issues of weight loss or severe diarrhea are huge quality of life issues and possible even life & death for me."
I think one of the things that we need to do is to educate the people who care for us about our issues & what bothers us & why. Most people mean well & misstep because of not knowing or not thinking things through & I think it's a good thing to just fix that gap. When I don't know something & am making insensitive or just clued out comments, I want people to tell me
not much new here. dd & I've been busy watching hallmark xmas movies & then doing our blog about them. we announce which one we're reviewing on our instagram stories each day. The blog is https://mistletoekissesblog.tumblr.com/ We've added ratings at the top (that was yesterday's project - we really didnt think this through at the beginning lol so now we're backtracking to fix up some stuff) and if it sounds like it's one you'd want to watch, there's a line break with the notice spoilers ahead so you can watch & read our comments later. It's a little fun project. I wonder if we'll get to all the new ones this year..there are still old ones we want to see/re-watch.
I have physio today, labs & MO appt tomorrow, chemo Thurs, maybe get stuff done on Friday? and then probably crash on weekend
pocket duty for scans & for those waiting for results. Thinking of you all
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moth, thank you for your comment. I hadn't thought of it that way, but you are absolutely right. These things can kill us - if the cancer doesn't first.
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Candy- that sounds like great news on your scans.
Sunshine - I'm sorry your sister was insensitive to your situation. I think you've already gotten some good advice here.
Still waiting on scan results here. The tech said they'd be to my MO tomorrow - and I have an appt there tomorrow afternoon. Last time he said the same thing, but the results posted the same day. Trying not to add worry where there should be none.
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Hi all. So much has happened here since I have been away that, as usual, I am behind in knowing what is going on with who.
Elderberry, this year has been all over the map with its weather weirdness! All summer we were braced to flee if a fire broke out. A recent walk through the forest showed the loss of many trees that had survived for hundred of years. There are many standing dead which attests to the brutal summer and add to the fire hazard for next year. Falling and removing trees is on the do-list, a task that gets more tiring as Hub and I get older. Dropping, limbing, bucking, piling and clearing limbs and burning is a massive job. Much of it in terrain so steep that the trees, once dropped, will have to be cut into manageable lengths and chokered up the slope behind a bulldozer.
As for flooding, no, the slope of our property means we do not flood. If we did the world would be truly toast! But with roads between here and the coast washed out, supply lines were cut, people panic bought, stores are pretty bare. I can walk into a chock full grocery store, look around and say, what on earth am I going to make for dinner? Now I walk into a mostly empty grocery store and ask the same question! I am a terrible shopper and have no imagination when it comes to emergency stock. I bought an extra package of Ichiban and felt pretty competent. I do have canned beans and tomatoes and plans to eat the dog if it comes to that. But some groceries are getting to the stores and unlike some people I have not hoarded anything. I can't decide what I should hoard (although I did buy two pounds of coffee!) I think we'll be okay. If I have to give up cooking, I'm good with that.
Micmel, constipation. Tamoxifen has made me a bit more constipated than I ever used to be. But recently I ate an entire bag on gummy bears in one sitting and ... almost died from the constipation that resulted. It scared the hell out of me! I'm guessing gelatin, a key ingredient in gummy bears, absorbs water from the gut and leads to epic blockages. But this is a theory and I might be totally wrong. At any rate, I now fear gummy bears.
Take care all, big hugs all around the living room.
PS. Just had my 6 month follow up uterine ultrasound to see if the D&C I had this spring had fixed all the problems. Nope. The news is not good. Endometrium measures 15mm thick. Stupid endometrium. Waiting for call from gyno. I am of a mind to just ignore it. There has been no bleeding and I suspect Ruben the polyp has grown back, tenacious bastard!0 -
Talked to my MO today and found out my WBC is probably at the lowest I've been at .71. Everything else was fine. I'm on 100mg of Ibrance. I was supposed to restart Friday but he definitely wants me to give it another week off and recheck it again. He doesn't want to switch me to 75mg just yet. I had been feeling extremely exhausted and at times dizzy but hey that's just me. Do I rest or carry on with my upcoming plans of Christmas decorating. So far I have one tree outside with lights. Ummmm? The rain has put a damper on most things. Soldier on!
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Hello ladies ~ I haven’t started anything. I have maybe three things bought. Nothing decorated. I don’t even believe that it’s right around the corner. Sneaks up on us for sure.
Runor~ hello my friend. Welcome back. Always good to see you here. DH and are sitting and doing nothing. Just watching modern family. Feels like a Sunday for some reason.
Hope everyone is doing ok. Hugs for all.
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Hi All, Just wanted to thank you again for pocket duty on Mon. Had labs and Fasoldex shots today and got the results of my PET. The left upper lobe lung nodule really lit up as well as rib on the right and right iliac bone. my ONC told me to stop Ibrance today and he ordered Verzenio to start on next Mon. He mentioned that the lung nodule will have to be biopsied and they really try to avoid that. I was so dumbfounded by all of this that I couldn't think of questions! I see a pulmonologist on the 29th and hopefully I will have some questions by then.
I don't have time for this shit! This is the 3rd Xmas that cancer has barged its way in and taken over my plans for the holidays, 2010, 2019, and now again! I am really feeling down and hate the thought of telling my kids.
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Lee~ I am sorry to hear the issues that are going on with your lung , I wish there was something I could do, to make the bad shit go away. We all are so fed up with cancer the cellular asshole. I’m also sorry it effects the holidays. Nothing is easy. Especially after cancer rears it’s stinky ass. Sending you hugs and support.
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