A place to talk death and dying issues
Comments
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I truly support the Cal. law and pray that it gets restored quickly.
Kaption, it must be difficult to absorb the changes, in the PET scan and in your treatment. When will you begin the Kadcycla? I hope you can build up a bit before that, and get some days with normal temp. Sheesh. I will be thinking of you, please keep us posted.
I went for Gemzar #3 today but got sent home. Blood work said really low neutrophils and hemoglobin, which kind of explains the super fatigue as of late. They'll try agin next Friday, and reduce the dose slightly or change the cycle to two weeks on, two weeks off. I asked if they could do a decdron pretreatment, as some people get that, and they said yes. I think that would prevent me feeling so sick all weekend.
Hugs, Mame
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I really support my right to my life. After diagnosis of mets to liver I am not sure I want to continue therapy. I think it would be easier for me and my family to stop here. I have never met a stage IV BC patient and I think that QOL is so poor that survival has no meaning. Ready to give up.
Thank you and God bless you all
Lena
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LenaGreece.
Oct 2016, my husband was writing my obituary and I am still here with a good life (different, but now adjusted).
Please give time for treatments to work. You might have to give a few treatments a try until you find the one that will keep you stable.
We care about you and we understand. As always, it is your choice how you define quality of life. You just seem so sad and I want to give you a virtual hug.
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Sandibeach, Believe me I feel your warm hug. I am deeply sad for this unfair battle with BC. For me QOL is when others do not feel sorry seeing you, when you can work , when you can just for minutes forget about cancer, when you can adjust your mind and read a book. That is quality and I don't think that from chemo to chemo I will be able to have it. Thank you so much. I wish you many easy enough years and why not a cure
Love
Lena
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Lena-I have been stage 4 metastatic for 6 years now. I was stage 1, 13 years ago, and it came back after 7 years in my spine and lungs. Its is now also in my liver (and has been for years) and many other bones. I've been on 6 different treatments. Half worked for 1-2 1/2 years and the other half 3-6 months. My current one I've been on for a year. The side effects leave me down for the week after chemo (I have it every 3 weeks) and the steroids I have to take before, during, and after chemo, give me thrush, and do not allow me to sleep much (talk about grouchy). Do I think it's worth it all. Yes, I do. I have my husband (high school sweetheart) of 35 years, 4 adult children, and 3 grandchildren, as well as my mother and 3 younger sisters. I'm 56, and intend on sticking with it as long as I am able. Please don't give up! I sure that it would not be easier on your family if you were not here. There are many different treatments out there! Hugs!!
Lynne
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Hi Lena, I was told almost 10 years ago that I had 2-4 years to live. I had a year from hell, (won't go into that) and got my affairs into order. I have been on numerous treatments. My priorities have always been QOL vs time left. My MO knows this and treatment has been directed that way. There are many drugs out there NOW that will allow you to have a new normal of life. I have been able to see my grandson born and now he is 5. I have been able to deepen relationships with people I care about. I have traveled to places I dreamed about. It has been a good run. My next goal is the 10 year mark in August. I have had liver mets for over 3 years now. I know my time is running short. I continue to celebrate life each and every day making each day the best day I can make it. There is so much to live for. Find that and celebrate.... virtual hugs to you.
Therese
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My sweet Lynne and Therese, how is it possible to receive so much positive energy from people who don't know me in person? I am 54 yrs married for 33 years to my high school sweetheart, mother of 3 daughters 28, and twins 17. I am very close to my family and only my DH is aware of the situation. The last days my only sunshine is this forum and your unbelievable attitude through treatments and informations. For now I have only Why and What if. I struggle for one more day but dark thoughts conquer my mind. I will give it a try and it is true that you saved my life. Believe me.
Best of luck and wishes for many more years to come. Hope to see you around for long
Hugs
Lena
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LenaGreece..keep posting. We truly understand the dark days. Celexa drug helps my depression and this group of stage IV women (and men) helps my fears and provides a tremendous support. It is not easy, but hopefully, you will find some wonderful moments in the days ahead.
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Lena, I know that the course of this disease can be scary and difficult. QOL is important to me, too, and my MO is aware of that. I was originally diagnosed with extensive bone mets three years ago, and liver mets showed up two years ago. My QOL is still very good. Yesterday, I had lunch with Lynne, who posted above. Yes, we are both named Lynne. Although she has had many different treatments during the past six years, she is a shining example of someone who continues to live life to the fullest in spite of MBC. She spends time with her family, welcoming her grandchildren for overnight visits, hosting holidays for her extended family, going out with friends, mowing her lawn, traveling, encouraging people here, and on and on and on. She does not think that what she is doing is extraordinary. She is just living her life and enjoying every minute. It is the many people on these boards who, like Lynne, have found that a good life with MBC is possible who have given me the courage and strength to face life head-on in spite of MBC. Everyone is different, but there is hope out there for all of us.
Hugs and prayers from, Lynne
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Lena,
Just wanted to add that I also have organ mets, extensive bone mets, and more than TWENTY brain mets (those showed up last summer).
When I was first Dx'd with the brain mets, I wanted to throw in the towel, too, but the gracious ladies on these threads convinced me to at least TRY whole brain radiation. I am STILL HERE
eight months later. Yes, things have been rough, I won't sugar-coat it, but I'm not ready to give up yet. I've had to make adjustments of course, and I'm not as mobile as I used to be, but it's better than being in the urn I purchased last year for my ashes. I now keep it on the formal dining room table to remind me how brief life is. I will be in that urn soon enough, but now I'm just trying to take it one day at a time. My DH and DD still need me. I can still enjoy cooking meals for them and putting out seasonal decorations to cheer the place up.
I understand where you are coming from. We ALL have to decide for ourselves how much we are willing to put up with, and what our limits are. No one else can tell us what those are or decide for us. We all have good days and bad days. I respect whatever decision you make. It's like my MO said to me, "You're the captain of the ship. I'm just helping you navigate through the storm."
I'm glad you've found a little bit of comfort from the comments here. Please continue to come back. There were times when these boards were the only thing that kept me going.
Blessings to you,
L
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Lena, I echo the other comments that it may be worth giving treatments a try and see how it goes. You just may be surprised at the QOL that you can maintain with liver mets, despite chemo and all of the other things we have to deal with. I was diagnosed with extensive liver and bone mets at the end of 2014 and still have a good QOL - work full time, raise a toddler, no one knows I have BC yet alone stage 4 and I am able to do most of what I did before. Lots of travel, time spent with my family and even exercise to varying degrees. Mind you, I do get tired and some days are hard but continuing to live the life I want more than makes up for some of the physical fatigue. I do have a strong will to live in that I was diagnosed with a baby in my belly yet to be born. I feel I must do what I can to stick around for as long as possible for him. I am currently on my fifth line of therapy (2 courses of hormone/targeted therapy and 3 courses of chemo plus a recent Y90 radioembolization to my liver). I have had 3 liver progressions and 1 treatment that failed from the outset. At its worst, my liver was 70% comprised of mets in 2016 with nearly the entire left lobe being mets with no liver tissue left. My liver is now hovering around 25%-35% mets and a large portion of my liver that was previously mets has regenerated. Even at my worst point back then, my QOL was great and I had no idea what was going on inside my liver. The body only needs 10% of the liver to function. The liver is a very tough, resilient organ and is not a "complainer". Thinking of you and hoping you find some comfort, clarity and the answers you need to make the right decision for yourself.
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Friends-
I was just informed that Bluebird (Diane) passed away yesterday. So sorry to be the bearer of more sad news....
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Friends-
I was just informed that Bluebird (Diane) passed away yesterday. So sorry to be the bearer of more sad news....
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Fair winds and following seas, Bluebird.
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Lena, of course you are the captain of your ship. I wouldn't urge treatment on you if you don't want it. And if you try a treatment, you don't have to continue it if it makes you feel too bad.
But it sounds from your posts that you are depressed. Have you considered asking your docs for some anti=depressant medication? They might help lift the dark clouds to feel so that you can think more clearly.
RIP Bluebird
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I am writing here because I know BluebirdDE posted here a lot. She felt Comfortable here obviously. She was gifted with writing and loving her big puppers more than herself sometimes. She was a rare gem and her words have helped so many. So fly sweet sister, fly with NO pain any longer. You deserve to run in the wind and feel free. You will be missed . Sincere hugs and sadness ~M~ my thoughts of strength to her dear family.
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last night I was unable to sleep because my thoughts were with bluebird and bluebirds family. Several of the books Bluebird recommended I purchased on Kindle. The books provided me with a lot of hope, serenity and peace. She would p.m. me on occasion to recommend additional readings. I would laugh and tell her it was impossible to read all the books she recommended. Because she was a treasure Trove of information on spiritual readings. And her writings always inspired and made a person think about the Journey. I shared her readings with friends of mine. My friends don't have cancer but they enjoyed reading the books. It made for interesting discussions about death and dying. But more importantly about how we live our lives. She will be missed.
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Rest in Peace Bluebird......your wisdom will live on in this earthly world as you fly free in that beyond. I’ll miss you
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50sgirl your words always a relief and pain killers
Lita57 the definition of life
JFL great warrior and all the others THANK YOU.
I desided to give my life a try. Informed my MO who reacte at once in case I change my mind. So I finished 1st cycle of Taxotere and Cisplatin, just returned after 2 days from hospital. I will no longer post in this page. See you in other pages more optimistic.
Thank you - difficult to express in this language but I m trying.
May God be with you
Lena
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Good news for Californians - An update on California's End of Life Option Act - the appeal was initially denied last month, but yesterday a judge reinstated the law. Opponents have until July 2 to file any objections. It's expected that it could be tied up in the court system for years, but while they fight it out, the law remains on the books.
Got hit with a rush of sadness when I realized that this is the thread where I first "met" Bluebird and I re-read a few of her last posts.
LENAGREECE I know you said you won't post in this thread any more but I hope that you pop in and let us know how you are doing.
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Thrilled about the the judge's decision on the End of Life Options Act.
Don't know if I will ever use it, but it's so comforting to know that it's there in case I need to ;>).
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Exactly that Lita57, I too hope to never want/need to use it but there is great comfort in knowing we have the option.
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I was wondering if either of you ever thought you might want to get the drug while the law is in effect since they keep changing their minds about it. If I lived in CA, I'm pretty sure that is what I would do, but I don't so what do I know? I just seem to be pondering this issue lately. Not a good sign. My cancer situation is fine right now but multiple other health issues are getting me down. I never thought cancer would be a low priority item but it is. Can that happen?
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jaycee49 if only it were that easy. One must have two doctors (your primary and another consulting physician) willing to state that your incurable disease will result in death within the next 6 months before you can be prescribed the drug (along with several other requirements including mental capacity interviews). They don't make it an easy process, rightly so I suppose. Since my pain level is currently under control I doubt my doctor would be willing to go down this path with me right now, but as we all know all too well, that could change any day.
Sorry to hear that your other health issues are taking priority right now. Is it the MS (you can tell me to mind my own business)? I have a good friend with MS and it's heart breaking to see what he goes through some days. Hope you start feeling better!
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I think it is very sad that a physician can have that kind of control......as in deciding if a person is of sound mind to make this decision. My mother has Alzheimers. She has wanted this option for years, and lives in a state where it is legal, yet is consider ineligible because her body is not shutting down nor is she considered of sound mind. I pray this option, at some point, becomes more commonplace and accepted. It has been shot down in Wisconsin. My PCP has already told me he does not support the option even if gets passed.
Jaycee, does the summer weather sway your MS symptoms. I am strange in that the warmth helps me. Seriously thinking about becoming a snowbird but hate to think of changing my neurologist and oncologist. You continue to be in my prayers. Hugs to all.
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Juli, it doesn't surprise me that your PCP won't support a person's right to die.
BIG Pharma and BIG Med stand to lose a lot of $$ if people from a populous state like California start "offing" themselves. No more expensive Rx drugs ordered from Big Pharma to keep you alive and suffering. Big Med can't keep billing the insurance companies for your hospital stays and useless medical procedures anymore; and because people are opting to check out a little earlier, and not get Tx month after month after month, hospitals and clinics won't need as many ROs and MOs.
Hospice workers probably aren't thrilled about this either. Who needs hospice when you can just take the EOL Options pills and be done with it in a matter of hours?
I don't mind the idea of TWO drs and a psych eval. My concern is that EOF Options law will PRESERVE and PROTECT one's existing life insurance policy because these measures are in place. The drs have to file paperwork, and the insurance co's will access it. If EOF IS the LAW, they can't w/hold the $ from your beneficiaries. All the i's have to be dotted and the t's crossed.
L
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wish my state had right to die. I know of more than one bco member had gotten all their tons of paperwork done and accepted but by then they couldn’t keep the rtd meds dow
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LoriCA, it is a combination of factors creating a situation where I have constant UTI's and constant GI issues due to antibiotics. I actually went to an infectious disease specialist last week who said my MS and cancer drugs gang up to make this happen. He was honest in saying he didn't know of any new solutions. But he was like all doctors. He didn't even look at my records before coming into the exam room. He wants to know what is happening right now and what can be done in the next 10 minutes. No history, no future plans. It seems that it is totally up to me to figure this out. I've read and read and looked and looked and tried multiple strategies and nothing has worked. I've posted and read on the UTI thread here and learned many useful things but my situation is unique. No doctor wants to spend the mental energy or time to help me solve this. Very frustrating. Or maybe there is no solution. I'm in a kind of black hole right now because of this. I will keep plugging along as we all do. Right now, I'm taking 500 mg of Cipro twice a day for 10 days. I said I would never take Cipro again. I say that each time I take it. It always gets prescribed again. That happens on the phone with a nurse and I have no way to alter the process. I need to be in the steam room with this. There is so much more to this mess. Anyway, Lori, males always suffer more seriously with MS than females so your friend is unlucky in that. Sorry he has to deal with it.
Julie, I don't have a problem with heat or cold. I actually like warm weather better although weeks of 100+ that we have here gets old. My problems come with temperature changes, especially quick changes. If it has been cool for weeks and then all of a sudden gets hot, I will crash. This is what may have happened this May/June. We had a very cool Spring and then BAM, it got hot. Good to see my fellow MS/Stage IV sister.
Lita, agreed, agreed, agreed. I didn't know that about life insurance. Interesting.
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I'm so sorry to hear that Jaycee49. Haven't had any UTI problems yet but I had a serious run-in with GI problems that lasted several months and understand how emotionally and physically draining it can be. Either one of your diseases is tough enough on their own, I can't imagine the struggle of trying to balance both of them. It must be incredibly frustrating to try to find a doctor who is willing to try understand and work with you on the bigger picture.
Lita is right, the most important part of the law is that it prevents a life insurance company from refusing to pay out because they decide it was suicide.
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Jaycee - My alternative health practitioner recommended I try D-Mannose for preventing & healing UTIs. Unfortunately we are out of town so I just dumped some in a baggie rather than pack the huge bottle so I’m not sure of the dosage. I do take one daily and 2 if I feel something brewing. It might be in my mind but I haven’t had a UTI since I started them. I’m sure you can do a web search or check with your doctor.
I never thought about the life insurance issue with RTD. Shows how well my brain has been working lately. Last night I got my usual medication out along with the gum I chew to get rid of the taste. Yep, I took a gulp of water & swallowed the gum! At least I laugh about stuff like this now. I actually cashed my life insurance policy in to help fund my daughter’s wedding years ago. Was diagnosed shortly afterwards so no new policy for me. That is ok in our situation but totally not fair for others. Then again.....life just isn’t fair at all.
Going for SheCrab soup for dinner. Another new experience I am totally looking forward to! Hugs to all
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