My Husband, My Life, My Love, My Family, My Cancer
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booboo - sorry about your results. Sending u hugs and prayers for treatment to kick this can to the curb
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Booboo, I’m sorry to hear your scan news. Has a biopsy been done to confirm for sure? Are you looking at a treatment change or surgery for the liver mets?
All, I’m in pockets too. I’m out of my big bag of starbursts, so I’m offering fresh fruit until I find some discounted Easter candy.
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Laurie, I am sorry to hear your news. I am in your pocket for support anyway no matter what. Hoping you get more information on what is next soon.
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Laurie so sorry to hear about your results. I think you can make it to PA. You can get gate assistance and let them wheel you through the airport. Just if you want to they will accommodate your needs. Saying prayers for you. Please consider Maes biopsy advice.
Runor I hope your appointment goes well and that it’s a fibroid situation and nothing more.
Mel sorry your holiday was empty. I hope your DD and SIL are feeling better.
My sister and her family were in town this past weekend and I thoroughly enjoyed their company. I wore my mask bc although my DS and BIL had vaccines everyone else didn’t. I did get to eat out with my brothers etc. it was the best weekend I had in a long time.
I’m in for support for all these scans. I have a PET on the 27th.
Tany
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I'm so sorry to hear your results Laurie, I hope your medical team can come up with a good plan for you. Holding you in my heart.
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Booboo- I am sorry to hear of the progression to your liver. Multiple mets or a few? Size? I know you are getting your thoughts/questions together for your MO. Local treatment? Change in systemic treatment? Biopsy? Deep breathe and take time to take it in, then dig deep for strength and see what is next. Hugs.
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Laurie,
Sorry to hear your news. Hopefully you'll get some good info from your MO and can come up with your next plan. I hope that somehow you can make the trip to PA to see your sisters. Keeping you in prayer.
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oh laurie, I'm sorry to hear your news. Thinking of you
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Tanya, I am glad to hear you got to spend time with family, glad you enjoyed yourself. I take the fact that I can be part of older DB household owing to the fact I live alone as a lucky thing. I really cannot imagine what family visits would have looked like had my mom been alive or my younger brother still a part of my life during the pandemic. I can only hope it has not touched younger brother's family or my nephew and grand nephew. Their facebook looks OK though.
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Booboo, I am so sorry. So not the news you hoped for. I know too what you mean when you say you don't know how to feel. Today was a beautiful day. Things are getting ready to green up, the sun was out people were going about life as if they hadn't a care in the world and I looked around and felt not part of it. Removed. Cut off. Isolated. In all this beauty and promise death is a looming reality. How DO you feel when that is the case? How DO you act? What DO you do? I don't frickin know. Booboo, this sucks and you make perfect sense.
Elderberry, I do have anxiety meds and I plan to use them. I see no virtue in suffering. So far I have gone to bed and dropped right off thanks to anxiety induced exhaustion. If my anxiety meds fail, my back up plan is the horse tranquilizer in the tack shed. That shit will put me out of the game until next month!
Tanya, with you for that scan and the long wait until then. Hugs, love and light to all.
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Booboo1- I'm so sorry to hear about your scan. I hope you get some good rest and that your MO has a solid plan to combat this.
Mara and Mel - I'm in pandemic fatigue too. I just hope we can all get back to some sort of normalcy. I am just tired of all of it. I hear you. Even when we have people around, I agree, cancer is lonely. It's good to come here where other's get it.
Good news today from my MO. My labs are back up slightly. Enough for me to keep taking my meds. I have another week on the antibiotic and I'm starting to feel better today so that was encouraging.
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Finally, my province is doing a province wide shut down, closing ALL non essential businesses except for carry out services and also limiting big box stores to selling groceries which is good. Now we just need to get people vaccinated who work in stores and factories and out in public so the ICU and deaths are lowered. I am encouraged that my government FINALLY did this. They should have done it weeks ago. It is the only way to keep people out of stores except for essentials.
I have my infusion today but in the morning which is good. Gives an hour long walk and I may or may not walk this afternoon as well instead of falling asleep post infusion. Will be very busy there due to being closed on Good Friday and Easter Monday. They have to fit at least 5 days of people into 4 days which is no easy feat.
If anybody needs it today, in your pockets and thinking positive thoughts for Laurie and Runor as well as Mel. Hope I am not missing anyone.
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BooBoo~ I adore you. It was in my liver too honey. But now it’s not.......... hang in there. Ablation. Deep breath’s see what the plan is. Find out the Arsenal they will unleash. I’m holding your hand.
Pocket duty for anyone who may need it!!!
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Aw, thanks Mel and all for your encouraging words. I have been combing through the liver mets blog to see what I can learn about it. It seems like it’s not an immediate death sentence to have liver mets, so I’ll push forward until my call with my MO tomorrow. I just wish there was a playbook about this disease and how progression works. But that’s impossible since we are all so different.
I did cancel my trip to PA. I’m just not up to traveling right now. I’ll hopefully reschedule sometime next month.
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Booboo- No, liver mets is not an immediate death sentence. When found, my liver met was 8 centimeters (the size of a baseball). It is 3 1/2 years later. True, it is not good to have progression to an organ, but there are things to do. There are changes in meds and local therapies to the liver (ablation, radiation, surgery). It depends on how many in your liver, how large, where located, how your liver is handling it (liver enzymes on blood tests). Your MO will have some options for you. Hug.
runor- You said the right words, yet again. Just how I feel.
emac- Happy your labs are doing ok and you can continue your meds.
Edited----Boo, Your profile says bone/liver in 2017? Have you had liver mets before?
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Candy,
It was questionable on my last scan but confirmed on this most recent scan. So the liver is a new dx.
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BooBoo~I’m sorry you’re experiencing this bag of shit. It depends on how big, where, what your bloodwork looks like. There are a lot of variables. It may be easy to access like mine was. I’m not convinced that they don’t have a plan. If that’s your only soft tissue met. You bet your ass I’d want it out. Some doctors get aggressive, some don’t, some won’t without a push from the patient. Take some time and let it sit. Talk to the Mo and you can decide. There’s always another fork in our roads.
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Well, I just finished another Zoom "Gentle Yoga" class. Previous one was last Wednesday and I posted about my frustration. I wanted to try it again. Still cannot do some poses--- Left shoulder hurts and cannot sit with legs crossed. So I didn't do some of the poses. Cannot really say that I feel much different after it is over. When we do the relaxation exercises I really am aware of all the places I hurt-neck, spine, hips, back, knees, shoulders, feet. Haha. I am one ball of pain. But, I will keep trying. Next yoga class is next Wednesday, but I have another appt so I cannot attend. I may log on to Chicagoan's yoga she posted. I did that one once already and can try it again.
Yoga is supposed to help, right?
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I’ve never done it. I’m Not gracious. it would be laughable. I’m humiliated enough trying to walk. Lol
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Yes yoga should help pain.
Well, I had nice nuses in the chemo suite. It is extra busy due to easter. The pharmacy took 3 hours to mix as they were so backed up
Read an ebook, listened to music then they unhooked me so I could go for a walk. Walked 20 mins up and down halls. Went all the way to the other side of the place and it is a large place. Enjoyable walk.
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Does anyone know if there is a Death and Dying thread that is for people who are NOT metastatic? I have done some searching but my search skills are limited. If anyone knows, can you direct me to the appropriate thread?
Why do I ask this? Because I think people who are not metastatic think about death and dying too. They look down the barrel of the rifle and know that at some point there is a bullet with their name on it waiting, likely, to come at them. Here in Mel's living room most of you are metastatic because I think Mel's thread was originally in the Mets Only category, but she generously threw her gathering place open to unmets, like me. But I know, we all know, that death is on the mind of everyone who starts down this shit show of cancer. Death, quality of life. when to say enough, HOW to say enough, the effects it will have on others, how people manage a life when the end is in sight? These things need to be up for discussion by everyone, mets or not. But I can't seem to locate a thread where this is happening.
As I look at an ultrasound that says my uterus is massively thickened and full of odd lumps and pockets of fluid in the lining, I am thinking about death. For two years I emailed daily with a lady who had pancreatic cancer. Watching (reading) her decline on the screen was horrifying. What she went through to prolong life was horrifying and then, at some point, and it's hard to pin point exactly when, it became prolonging death. At some point medical intervention became medical torture. There was a shift. I can imagine that if you are in the middle of it, bobbing along on treatments and tests and being sick that you lose sight of the ocean because you are so tossed on the waves. I don't want that for myself or my family. Before I ever get into that roiling ocean I want a clear path to where my set points will be when I say enough. Maybe that is wishful thinking on my part, but I am the sort of person who likes to always have a plan B. I like to have things in order so they are there when I need them. I think I need to discuss with others, who are not metastatic but contemplating death anyway, how they plan to carry on and how they decided to not carry on anymore. The banker always says the time to apply for a line of credit is when you don't need it, because if you come in desperate for money they won't give you a line of credit. I want my thoughts on death and dying, what is a good life, what is a good death, I want those at least to be something I am working on BEFORE I need them. I want to get my shit together.
Wouldn't it be nice to come back here and post that it was nothing, they took my uterus out and it's all good, no radiation, no chemo, no spread? But I am not expecting that. There needs to be a place where bald, plain, unadorned fear, terror, grief and rage can be laid out and a way forward the topic on the table. If that place is already here, please help me find it.
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yoga improves balance flexibility and core strength. But it's not fast or magic. It takes time.. I think actually that's one of the main lessons of yoga - patience. Take the time to watch and observe and feel your body, your breath. I've been doing yoga badly on & off for decades. I was blessed early on to take a class with an instructor who I think was in her 70s who by then had arthritis and simply couldn't do certain poses but she had been very well trained & doing it all her life. Her class really cemented in my mind the understanding that yoga is not about doing a pose 'right'. It's about showing up and trying to connect to the body.
I'm still dealing with mild pneumonitis. My MO is away now for a 3 month research sabbatical so I'll be talking to my temp MO later today. My immunotherapy yesterday was cancelled pending our discussion today about whether the shortness of breath warrants treatment with steroids again (in which case we have to hold immunotherapy for the next several rounds) or if we can just monitor.
My blood work is a bit off. Hgb & albumin falling just a bit below norm and my CA15.3 jumped up a bit from 3 weeks ago. Otoh, I just had my Pfizer vax and heard inflammation to raise it? On the plus side, WBC is fine so I can get chemo tomorrow
I'm a year on first line tx and in mTNBC that's pretty great/unusual, so now I'm just waiting for the other shoe to drop, kwim? I will have a CT & bone scan sometime at the end of the month.
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runor: I don't think the Death & Dying is exclusively for met sisters. Does it say that? I can't recall. Yes, it is as far as I can tell mostly mets because we know our proverbial ticket has been punched. If you are thinking and worrying about it, then please go there and post. No one is going to kick you off. You can pour out your fear and your grief. I only hope that your feeling of impending doom is unfounded. They will remove the offending organ, you will get some form of chemical/drug intervention and your life will go on - for a long and happy time. Maybe Mel or the Divine M know of another site that would help you.
I prefer to live in denial but then something always comes along to dump a bucket of cold water over my head. I do have a Plan B.
moth: have you been doing paclitaxel for a whole year?!
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elderberry, sort of! I did paclitaxel March - Nov, then switched to nab-paclitaxel & have been on that ever since. So yes,just over a yea now on a taxane. But they consider the 2 essentially same so still 1st line. & we switched not due to progression but because my Roche clinical trial stopped & their evidence based recommendation was a switch to nab-pacli.
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moth: I tolerated taxel really well but I was glad to be on it for only six months. Fingers crossed for your upcoming scan. Maybe by Fall we can all meet up again for lunch.
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Elderberry, there is a Death and Dying thread that is for stage 4 members only. They DO get upset if non-stage 4 post there. Moderators chime in and ask non stage 4 to not post there. We can read but not supposed to post. I understand stage 4 wanting their own place as you say, the ticket has been punched and the situation is different. However, everyone thinks about death and I think it's a needed discussion for anyone who feels the need to ponder this topic. I have not been able to find such a thread, but it might be there and I'm just too inept to locate it. I hope your prediction for me is correct, wouldn't that be wonderful?
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Hi Runor,
I agree with you all of us could use a general death and dying thread. My diagnosis and this pandemic coming on the heels of the end of my radiation has made me think about my own death more than I ever have. I agree my perspective is significantly different from that of Stage IV but it would be nice to have a place to talk about our thoughts.
Jane
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runor- I understand that cancer in general may be terminal. I mean, pancreatic or liver or brain, but this site is Breast Cancer.org. And the only ones of Breast cancer that are terminal are Stage 4. I hear so many times "You don't die from early stage breast cancer, it is Stage 4 that kills". I think what you are looking for is a cancer site that deals with all cancers--- pancreatic, lung, brain, uterine. Then you could discuss/vent about dealing with a terminal cancer situation and what you want for your future and a Plan B. I don't know if what you seek will be with this site.
moth- I am going to give Yoga a try. My Palliative care people suggested it. Non-pharmacological intervention. But this is "gentle yoga". Some of it is "chair yoga". Mainly stretching. Rolling shoulders. Rolling neck in a circle. Raising arms above head. Bending over to stretch lower back. Not the yoga I first thought of where you do the "downward dog" or twist around on a mat or stand on 1 leg.
Patience-- haha. I have none. That is the part I like the least. "Concentrate on your breathing. Concentrate on your eyes, eyebrows, throat. Let yourself relax. Feel your breath come from your toes". I cannot do that. My mind wanders. I guess I am not good at meditation and the such.
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candy, everyone's mind wanders during meditation! Just notice that your mind has wandered and bring it back to focus on something. That's it. No judgement, just come back. We're too hard on ourselves sometimes. I really find that a lot of this work consists of accepting this is a hard thing, it won't be easy & it's ok to be bad at it!
My favourite yoga is "restoraive yoga". You need blankets & bolsters (or pillows from your couch) & you turn down the lights and you get comfy in a pose & stay there for like 5 min & just sink in. It's magic. I loved going to restorative yoga in the studio. It's harder at home. But there are some lovely restorative yoga sessions online. Nice to do in the evening.
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Runor, I hope that today’s telemed appointment gives you a chance to have your questions and concerns addressed as well as giving you a better understanding of the plan of action. We are all hoping that things turn out better than you fear. Do you know when you will have surgery?
Booboo, When my liver mets were diagnosed almost 5 years ago, I thought it was a real game changer. I talked to my MO about my feelings, and he made me realize that I wasn’t sitting at death’s door. I have not felt any worse with liver mets than I did before that diagnosis. My life has changed very little. My dh and I have done lots of traveling. There are many people who have lived with liver mets for much longer than I have. As Candy so clearly explained, there are many ways to treat liver mets including local treatments such as Y-90. I hope you are able to have all your questions answered when you meet with your MO. I know that it will take time to digest all the information.
I had blood tests and MO appointment yesterday. I also had some X-rays of my spine. I will be moving on to Havalen on Tuesday as long as my blood counts are high enough. It turns out that Verzenio was not my friend.
Mel, How are your family members who tested positive for Covid? I hope they are not having severe symptoms. Are you and your DH feeling? No signs of Covid, I hope.
Candy, Patience can be tough! Haha. Maybe yoga will help you gain some. As a fellow member of the no-patience lube, I know how it feels. There is probably no hope for me.
Hugs and prayers from, Lynne
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