A place to talk death and dying issues
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For me Anotherone, morphine and fentanyl, at least for a while. My entire treatment right now is focused on trying to prevent me from reaching that level of pain again, but that tumor was resistant to the last chemo we tried and barely responded to rads, hopefully it will respond to the next chemo we try. If not, who knows.
I think others like Lita are in a better position to talk about when pain meds are no longer enough.
I was an organ donor. When I renewed my drivers license last year, I unchecked the box but they automatically put it on my license anyway. I don't know how to take myself off the registry, but I suppose that medical personnel will know about the cancer when I die anyway. Briefly thought about donating my body to research but decided that the whole idea creeped me out and was too much trouble.
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LoriCa, I think you and me are in a similar place right now. Managing pain, trying one last chemo, etc...
Donating body is creepy. I do think MO will ask me. Not sure what I'll say right now. Probably no. I want my ashes spread in Yosemite. Shy can't we have what we want? We've had a tough go.
6 months ago I was working out gheee times a week. Now I'm bedridden. Go figure.
Stefanie (Stefajoy, a beautiful Sunset
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Stefanie I'm not quite as far along as you are, I still have some chemos to try and I'm not bed ridden but I'm no longer working out in the gym or doing Qi Gong either. I can't do anything that requires strenuous use of my right arm, even carrying groceries in to the house is painful. The problem tumor is tangled in a bundle of brachial nerves in my right arm, two years ago I lost all use of that arm for several months, gained it back with my first round of chemo, but a few months later it started acting up again. Right now I just have total numbness in that hand, range of motion is starting to decline again, and mild to moderate pain at the tumor site. It could be worse - I don't currently have any organ mets causing serious problems.
The frustrating thing is that it hasn't really responded to anything in the past 18+ months (I forgot to mentioned that it's resistant to Herceptin too) other than some slight shrinkage from rads that didn't last long, and although my original liver and bone mets resolved on Herceptin, new mets that are resistant keep popping up in new places. I haven't had a stable scan since January 2018. It's really hard to not let that mess with my head. Just once I'd like my oncologist to tell me that we have some good news.
On the plus side, I don't have a problem with scanxiety because I already expect bad news haha! I'd be more shocked if I actually had a good /stable scan.
I'm so sorry you are going through such a tough time. I really hope that the next chemo you try works well for you. Hugs!
Lori
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In reading a book about a man going through his daughter's crippling and painful mystery illness, he said RITALIN was given to her to make her pain meds more effective. She was on max dose of most pain meds and still in agony so they added ritalin, which can have the effect of enhancing pain control without increasing dosage.
I tucked this nugget of information away for a time I might need it. RITALIN, talk it over with your doc.
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you are in my thoughts every day. I worry about you, I wish you God speed and easy days. I can't imagine your journey. Love to you Lita. To you and your family.
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I belong to a Facebook group about end of life issues. Someone posted this piece and I asked her permission to share it. She said ok but to keep her name intact. This is wonderful writing and sentiments. It really resonates with me. I thought some here might feel the same.
Flori Smith
When Your Name Won't be Inscribed in the Book of LifeI've decided to skip Yom Kippur. Praying for your name to be inscribed in the proverbial Book of Life is a reasonable expectation for most people. But what do you do when it's not a reasonable expectation? When it is instead reasonable to expect death in the upcoming year?
I've had Metastatic breast cancer since 2007. In active treatment every three weeks. Not counting my original diagnosis and all the treatment and surgeries I did 23 years ago. For over a dozen years I've had metastatic disease; breast cancer that has spread to my lungs, to my bones and to my family and to my friends. It is insidious.
Going to Rosh Hashanah and Yom Kippur services is as much about tradition as anything else. But for me traditionally this time of year is filled with grief. October. The month my mother dropped dead. October. Every single day is a reminder of breast cancer. Between TV, online media and the constant pink-washing of products, I cannot escape October and the concurrent feelings of grief and sadness. And the fear and feelings of hope slipping away.Reasonable expectation for most of my peers, "inscribe my name in the book of life". For me as I'm writing these words my heart is broken. Grief. Isolation. The process of dying is something one does alone. Until the end, when if you like, you can be surrounded by family and friends. But the days and weeks leading up to the end often feel un-purposed and somewhat of a free fall.
I wish there were more examples of death in the early part of the process. A dying process that is normalized and not isolated in hushed shame. I wish I knew how to die with grace and courage and comedy instead of rage and fear and sadness and strangers.
Even our own doctors drop us when we are dying, when no more treatments can be found, so they don't have to be involved and be a part of death. They no longer treat or see us. We are turned over to hospice care.
I don't want to be turned over to hospice and palliative care! What a joke and what a lousy reward for 23 years of being an integral part of my own medical team! I don't want to be turned over to strangers! I don't want to interview hospice, get to know them, see if I can trust them, see if they will see me as an individual or if they will insist upon the hospital bed and morphine pump, in-house oxygen and all of the things I do not want to or need.
After all the scanning, the monitoring, the blood tests, the follow up, the emails, the researching, the searching, the applying for patient assistance, the carbon copying of all my doctors, records back-and-forth coordinating information, sending emails to other doctors at other facilities to gather more information, searching clinical trials, reading side effects, networking with other survivors, emailing and meeting with my team, all so I could continue to be alive. It all just stops. Ends.
No more care, no more follow-up. I am set "free ". Now I will be turned over to strangers whose specialty is death.
This Yom Kippur, I will not be going to synagogue. I will be going for another medical consult, for fresh eyes on my case. A physician to help me decide; is there a way to access compassionate use chemo or a clinical trial that might give me more time, with reasonable quality of life, or is it time to blow out the candles and leave the dance floor?
May your name be inscribed in the Book of Life and may mine be inscribed in the book of Quality of Life.
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Brava, Jaycee. Your words are brave, your actions braver still. Never give up going after what you need.
Tina
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Tina, those are not my words. Those are the words of a friend in a Facebook group that deals with end of life issues.
Her name is Flori Smith (no relation). I asked her permission to share her post. She said yes as long as I kept her name intact.
Flori Smith, Beautiful words. Yes, brave words.
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Thanks for sharing this....beautiful words indeed. What a brave and courageous woman, she wrote down what many, indeed all of us, will experience at some point. There seems to be a point where we start asking...do we try to live longer or Trade time for a better Quality of Life. Food for thought.
An
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Jaycee,
Thanks for sharing Flori's words. That was beautifully written.
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Flori Smith,
May your name be inscribed in the Book of Quality of Life for now and the Book of Life Eternal (eventually).
Loving kindness,
Madelyn
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Flori’s words really touched me today. Thank you for posting Jayce
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wow~ that was deep, honest, gut wrenchingly true. Every damn word of it. Moved me to tears!
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I'm still among the living but the less said about the last month the better. One word, nightmare!
I have now gone under hospice care, at home. So far it is WONDERFUL and expect it will continue.
No estimates on life expectancy except oncologist did guess 3 months, maybe a little longer.
Respectfully posted among this recent sad news 😢
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Oh muddling, I’m sorry.
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Muddling, it's so very hard to hear that news. But I'm glad hospice care is being good to you. We are all destined to be where you are, and I pray everyday that it will be quality time, surrounded by the things and people that mean the most to us. Hugs to you, dear one.
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My wife and I recently had "the talk" from her Oncologist. He is ceasing all chemotherapy because she is too frail to continue treatment. She's TNBC with metastasis to the bone then it went to her brain. She had brain surgery to remove the cancerous portion of her brain, the Dura brain lining. Next 11 days of WBR. She then went back on Halaven for awhile but had seizures and was getting to frail to continue. Recent MRI show brain clear of all cancer.
She is so exhausted, just sleeps all day and has incoherent night rages. I am the bad nurse and make her eat so she's not into Cachexia yet. If I could only turn around this exhaustion her MO would reconsider chemotherapy. In fact he mentioned immunotherapy Tecentriq. My wife has a very high PDL-1 and this new FDA approved treatment does exceedingly well for anyone with a high PDL-1.
I've been on this forum a lot looking for that one hint, that one thing that might turn her around. Nothing, just day after day of the same with no letup.
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mike, sorry this is such a tough time! I wish I knew more to help. I've read of cachexia on other forums so perhaps throw a question to a tnbc page in addition to here. Prayers.
EDITED to add this link.for mike. It might help or at least suggest other searches.
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Muddling, I’m sorry to read the news about your needing to go into hospice but want you to know you’re in my thoughts and I have alway appreciated your posts.
Mike, sorry about what your wife is dealing with too.
Many hugs for all of you.
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Mike, sorry to hear about your wife. You may want to try ashwaganda supplements as a Hail Mary for the cachexia if your wife will take them. I took it to boost my hemoglobin so that I could remain on chemo but it has some other very good benefits. I feel like a different person now. It is good for energy, boosting thyroid function, boosting blood counts, building muscle and increasing appetite. I gained weight very quickly on it, it has increased my energy a lot, helped rebuild a bit of muscle and I now have a raging appetite. For the last few years, I forced myself to eat to the extent I could stomach it, in an effort to minimize weight loss/cachexia. No longer a problem.
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MuddlingThrough. I am so glad you posted that link. It does NOT fit my wife's profile, thank god. She still likes food, just not a lot. She really likes Boost. Her weight, though down, hovers at 165'ish. To me anyway, it is not cancer eating away at her body. Very strange though. Recently she had a PET scan. The scan showed some progression, yet it also showed cancer lessening in many places. She's only had about 6 Halaven infusions since February. You'd think the cancer would have gone crazy in her body by now. The only other thing she's had since is Fenbendazole. To me anyway, it's the damage to her brain from the operation plus the WBR is causing the exhaustion. The results are the same; too tired for chemo or treatment.
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Muddling through,
I am glad to hear hospice is helping with your QOL. You are in my thoughts and prayer.
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Mike,
I am sorry to hear about your wife. I hope you can find something to help with the exhaustion.
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JFL,
I've heard a lot of Good things about ashwagana. What brand do you take?
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Muddling and Mike: you are in my prayers.
It's so hard to hear that it's time to consider or go on hospice.
Hospice can help with QOL. LongTermSurvivor Stephanie was a whole year on hospice.
Wishing you the best.
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Muddling.. thank you letting us know. I can’t help but be happy for you...you get to choose the ending. I guess that’s all any of us can ask for....your grace and courage are an inspiration. Thank you.
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mike, I’m sorry to hear your wife is fading. Let’s hope she rallies the further she gets away from treatments and has a chance to heal. I have no words of wisdom other than to send you warm hugs.
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Muddling, I hope that your home hospice continues to be a positive experience. You have a good outlook on the big picture, despite your recent challenges. You are one tough cookie.
Simone, I take Garden of Life mykind Organics Ashwagandha 600mg tablets. Available everywhere. I usually purchase it from Amazon or Vitamin Shoppe.
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Thanks JFL. I'm going to order some. I stopped taking my antidepressant and need something to replace it.
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question: I have my burial clothes ready. Actually got together last year. ANYWAY...I think I also want to add my academic master's robe and hood. Nothing for on my head. I want your honest opinion here folks. Is that the tackiest idea ever? Or okay? I know I worked two jobs with a young kid while earning it and it means a lot. Cross posted
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