A place to talk death and dying issues
Comments
-
A big thank you to you folks who responded. Exactly what I needed. I'll be meeting with MO tomorrow before infusion #5, and I am so informed by your comments. Facts. I need facts!
0 -
I don’t know if this question has already been answered, so forgive me for asking again. How do you know when you are at the end of your MBC journey? I don’t know if we’ll all experience different symptoms or if there are key things to look for. Thanks for any info you can provide.
0 -
I'm interested to hear what others have to say about this question. I have wondered this too. How do we know? I ask this as a genuine question, because in January I really felt like I might be dying. When I started this new chemo I came back to life somewhat, but I know it's only a matter of time until it closes in around me again.
*****
My palliative care doctor told me this, because I asked. I thought it was helpful so I'll paraphrase here:
There are three phases of MBC.
Phase 1 is when we have MBC, but we are not sick from it and our bodies are functioning normally, as if we did not have cancer.
Phase 2 is when we are noticeably sicker. We might sleep more. We might be more tired. It might be harder to eat the way we used to. We might lose a lot of weight without trying to. Our labs might start to go wrong. We might be in and out of the hospital. It's not any one thing, but there is a litany of problems that we just can't shake or come back from. There is a noticeable downhill trend over a period of time.
Phase 3 is the actual dying process, where the body begins to shut down. We might have fevers, and go in and out of consciousness. At first it can look like an infection, or some other temporary treatable problem, but it's not. We can tip into Phase 3 very quickly, with little to no warning.
0 -
buttons, thank you for this description from your palliative care team. I think I'll copy and paste it into a Word document and save it for future reference. Do you have a palliative doctor in addition to your MO? Who calls the shots regarding your care? Actually, as I wrote that, I realized that YOU call the shots, but who would you say is the head of your medical team?
The book "That Good Night" was suggested somewhere on this forum - I just don't remember which thread. It was written by a palliative doctor. Very good reading.
Thank you again for this valuable information.
Carol
0 -
My thanks to both of you. Carol, I will get that book. I have felt like Buttons recently where I have wondered if I am in Stage 3. But most often it’s been the chemo that is making me feel so lousy. I am definitely eating less and sleeping more, so I will let my Palliative Care team know this.
Palliative Care handles pain management for me, as well as offering support (emotional, spiritual, etc.), and I am so grateful that the girls on my blog suggested them. They are not afraid to give me the pain meds I need to function. That part is crucial. Our oncologists are not the best place to get these drugs, as many of them are not experts in pain management for cancer patients, especially those of us with MBC.
Thanks again. Hoping to hear from others who have their own experience.
0 -
Right now my MO is leading my care, but I check in with palliative care about once a month. It's been good, and when the time comes to stop active treatment I'll already know my palliative care team, which I think will help ease the transition.
I feel like I'm solidly into phase 2, and that for me tipping into phase 3 would not be a big leap. January was very scary for me. But chemo actually worked this time, and I came up for air! It was a good feeling. But I know it can't last forever. Still, I'm enjoying it while I can.
0 -
PS regarding pain medicine - my MO said something that really made sense to me. My MO said that treating cancer pain effectively is important to our physical wellbeing, yes, but it is also important to our subjective mental and emotional wellbeing. I didn't even think of that, but I realized my distress surrounding my cancer is less when I am in less pain. It may seem simple, but I think this is often overlooked.
0 -
BooBoo and ButtonsMachine, thank you for this thread. The 3 stages of MBC your Palliative Care MD shared is so useful. I realize I'm solidly in stage 2.
Followup to my earlier posting, I did do Taxotere #5 last Friday, at 60% reduction of dosage. I had had 80% reduction for #4. So far so good. Normally today would be when zombie-woman starts showing up, and pain, but neither is causing much problem. I just did the dishes!
MO said that following Taxotere (he wants me to do a total of #6-8, if I can tolerate it), he wants me to go off all cancer treatment until my next metastasis. He wants to do genomic testing to be able to prescribe more targeted therapy. My mets have been in bone only, so hard to get good needle biopsy. Weirdly, I'm hoping next met is in soft tissue. He said we could look at as much as a year before next met. (That made me lurch. Only a year?)
Anyway, grateful for this forum and thread. This topic is much on my mind these days. I want time, but on my terms.
0 -
Hi buttons, pearl and boo, wishing you comfort and hoping phase 2 can revert back to phase 1 for each of you. thank you for sharing.
0 -
Thank you for the well wishes, helenlouise!
0 -
I also wanted to extend my thanks Buttonsmachine. I found the description of the phases very helpful and thought provoking. I would say that I am now at the beginning of stage 2. Over the last year I have found much of my energy and vitality has gone. I'm still doing well overall but fatigue is an issue and, quite frankly, things are just getting harder. I've had to deal with a number of issues related to the disease and keeping weight on is becoming a bit more challenging. (Hard to believe after a lifetime I trying to keep weight off!) Definitely not really sick but feel my capacity is diminishing slowly.
Here's hoping the meds get us back to stage 1 soon.
0 -
Jaycee, congrats on the passage of the bill, you fought hard for it and i'm happy for you to have that option.
Button - thank you for posting that information from the palliative care doctor. I think its really helpful. I'm going to save it not only for me but for my Beloved. I think spouses or caregivers might find this helpful too, to know what to look for and to understand how mBC works in a sense.
Truthfully I started out at Phase 1, went to Phase 2 and then bounced back to Phase 1 again. But this past Nov I've solidly stayed in the Phase 2 part, marked noticeably tired, able to sleep and nap without aid (the start of cancer treatment made sleeping a problem which never was before, had to have alot of help and even then it was hard, that was the case until this past Nov when all of a sudden I didn't need help, that was a clue to me things were changing a bit. Scans are stable but I'm basically just trying to get a few things done in between naps. Part of me doesn't mind it (all the sleeping) because I feel I have alot of sleep to catch up on, at the start of early stage treatment and going forward I was running on 2 to 3 hrs max sometimes less even WITH ambien. It's great to be able to sleep without popping a pill, tho it concerns me too that I can snooze so well when sleep and me were on different planets during early stage cancer treatment and now I have mBC.
On a side note, I asked my beloved once, what consequences lie ahead of me for prolonging things too long....sometimes the point of cancer treatment seems to bring someone to the physical brink even if things keep failing left and right or its about to turn that way. Just feels like really crappy options to me. It would be different if everything we went through had a cure waiting for us at the end. That's what pushed me through all the chemo in the beginning, light at the end of the tunnel, that hope. Except now morbidly the light at the end of the tunnel waiting for me will be the pearlie gates because treatments failed me early on. I'm scared too that if i push things back too far that the end will have me with more pain and difficulty than if i had just let things go on their own. Just things I think about. These are hard decisions. Hard things to think about.
Why can't cancer care change. This whatever it is that we've all been enduring over a year globally proved collectively something could be done if they really really wanted to something.
0 -
Well said Rabbit. I bobble between 1 and 2. I have the oral chemo fatigue like crazy. I have to nap. I don't mind the naps, if I don't get a nap that day it's not too bad but the fatigue can be staggering I find even if I don't sleep resting my body helps . Cancer care sucks the life out of you. Hamster on an endless wheel. Until we greet the pearly gates like you mentioned. Who would have thought people could be forced to live like this. Internal/exte torture. Just knowing that I hear the ticking in the back of my mind reminds me daily. Trying to beat cancer fatigue is a job in itself. I know people work with stage four cancer. I don't know how but they are amazing. I just couldn't do it. Not possible. I'd pass out .
0 -
Buttons - Thanks for the Phase description. I've been a Phase 2 for quite a few years. However, I don't know if I should blame my physical shortcomings on stage 4 or old age. I'm still on the same chemo/meds that I began with, and I've had a lot of side effects along the way. I started to think the the SEs would do me in before the cancer and cancer meds.
It took me a while but I have decided to accept Phase 2. It doesn't do any good to protest, and I have an excuse to lounge around and read, and have naps. My family is in tune with my needs, so I don't feel guilty.
My thoughts are with all of you guys.
0 -
Buttons,
Thank you I have been on phase 1 for close to 9 years and very grateful Just now rollingi into stage 2. The new treatment wiped me out initially, but I seem to be tolerating side effects after the 4th round (enhertu) I have been adapting my energy level for years and will just keep on doing so - tho I get very frustrated
I am a keep moving sort of person
Gentle hugs to all
Nel
0 -
Micmel, Agree 100%. I don't know how people work with Stage 4. Just getting through the fatigue everyday is a full time job for me. I'd be a grouchy mess not being able to nap at least once during the day. Hamster wheel, good way to put it, tho sometimes it feels like the wheel is going without me moving it as i try not to get knocked out from above and below as i wobble onto my feet again. Good to see you, have not seen you in a long time.
Jaycee - have you decided if your going to take a tx holiday for a bit? You once mentioned having a purpose in life in this thread a page or two back. I think one of your many purposes is educator. You wrote so well to those panels in regard to DWD and cancer, even in those short paragraphs you let people glimpse into our world. You said recently on here in this thread "So with cancer treatments, we just accept the horrible redundancy and no one ever asks WHY?" and "The current situation with cancer is just accepted as the norm. I'm tired of that attitude. Patients with cancer just keep living longer and longer in various states of illness. We're getting used to it. We accept it as no big deal. It is a big deal if you live it every day for years"<----this, this is what people need to be talking about and you stir that conversation and its good that you do.
Prayer requests come into my church all the time and most of them are from newly diagnosed cancer patients or for someone just entering hospice. I click on Youtube and an ad for Kisqali runs for 30 seconds. I turn on the tv, an ad for Memorial Sloan Kettering greets me, I turn on the radio and its an ad for a oncologist in NYC who treats difficult cases. I go to the grocery store there is a booth for St. Jude's. I cannot escape cancer. The reality of it, the damage it wreaks and the death it causes. It's maddening how saturated we are with this evil entity. I can't stand it sometimes. And then i stare at my Ibrance pills and remember its in me too....
That's when i whip out a book or my music playlist or a movie and shut most everything off for awhile just to escape for a little while. Doing better than I was in the beginning of all this, but find myself always adjusting. Some days its ok, other's not so much. Seesaw effect.
0 -
No, those of us who work full time with stage IV are not amazing, just lucky. I am about to retire but have worked everyday since my stage IV dx, almost 10 years ago! I did take 3 1/2 months off for surgery and that awful collapsed lung, but have been going 120% since then. I have no secrets, no strategies or special protocols. I've never had any type of chemo, just AI's. So although there are not many like me, outliers do exist. Wouldn't it be nice to find out why outliers exist so we could share it?
For the record, my joints ache (Aleve and cannabis are my friends), and I am exhausted at the end of the day but I have grown children and ditched the husband years ago, so my time is my own when I get home from work. But it is just pure luck . So, I do feel lucky but not amazing. I also think I might be bored in retirement but I will continue substitute teaching, at least for a while since I can choose which days I want to make myself available. Oddly, I am not in fear of progression or death. Not that I welcome it with open arms but I do accept it's inevitability. Take care.
0 -
Lucky? I would say a bit stubborn and determined not to give in with me. I'm scaling back now because my body is just starting to get a bit tired but until recently I continued to work full time with extensive bone, pleural and now more recently liver mets. As you can see from my profile I have been on numerous treatments already, some packing a serious punch. (Verzeniowas interesting and Xeloda is definitely taking fatigue to a whole new level!)
But amazing? I wouldn't say that either. I don’t have children and enjoy working. It keeps me from dwelling on things, engages my mind and I like not having to worry about finances. For me it has been a choice and we are all so unique and individual. I am in awe of many on this board juggling families, careers and much more. And also those who embrace more recreational pursuits.
Quite frankly, I tip my hat to each and every one of us who get up each day to just carry on. Well done!
0 -
I am in a place where I’m reading about death and feel for me it’s in the not-too-distant future. It may be because I’m in a lot of pain right now, waiting for testing and stents to be placed in my kidneys on Friday. I hope that’s what it is. I’m reading up on death, not so much for me, but I want to help my husband, daughter, and family to be okay after I’m gone. I’m hoping the issue with my kidneys is just a result of the lobular and not spread. As much as I hate that I had this disease for six years with no knowledge or medication, part of me is so happy I got to enjoy that time without thinking about it 24/7.
I’m not angry or depressed. I just want my family to be okay. I think back to an acquaintance who had ovarian cancer many years before me. She died after ten years, not seeing her daughters be married in a double ceremony, not being able to watch the birth of her three grandchildren, and I am beyond grateful I’ve seen my daughter marry her wonderful husband, and I’ve had almost two of the most wonderful years with my grandson. I’m sad I will not see him grow up and that he won’t remember me, but I will die knowing he was my best buddy.
I may not die tomorrow, next week, or next month, but I know it’s coming. I am at peace with death. I’m hoping after Friday I feel good again. I feel weak and unable to play and can’t believe how quickly my health went from decent to yuck. I looked my doc in the face last month and told her scans may not see the spread, but I know in my heart it is spreading I think she was taken aback.
I would appreciate any thoughts and prayers that this is just a blip. I’m in my eighth year and know the odds of living longer are against me. I’ve gotten two and a half years of it in my stomach and am appreciative of Ibrance and Letrozole for giving me more time.
0 -
KBL, my thoughts and prayers are with you and I am sending a big virtual hug. I hope once you get relief from the pain, you will be in a better place.
0 -
KBL, sending you a big hug, I'm so so sorry your dealing with all this. Thoughts are with you tonight, praying its just a blip and you have more time to enjoy ahead of you
0 -
Dear KBL,
I will be praying for you. God bless.
Nancy
0 -
KBL- Thinking of you and hoping the stents solve the pain issues. Praying you get some relief
0 -
KBL - so sorry to hear that you are in so much pain right now. Praying for some relief for you and a resolution to what is causing it, so you can feel good and be back on your feet again.
0 -
Thank you all. I really appreciate you.
0 -
KBL,
I am going to be one of those annoying people who sees the silver lining in almost everything you wrote. Of course, pain is no good for any of us, and I am right there with you. I am under the direction of a palliative care group who has helped me tremendously with pain management. Not sure if you have one near you?
I feel like I could have written exactly what you wrote.
First of all, eight years is pretty spectacular. If we weren’t dealing with a crappy disease, I’d say you should throw yourself a party. Living one day with MBC is tough, let alone eight years. And I would look at it exactly the same way—not knowing allowed you to really live, and not with MBC hanging over your head.
Second, there is always someone who has it worse than us, as you stated with your friend who had ovarian cancer. I like to look for those little white lights that appear in our lives if we let them.
Lastly, no one can tell you how long you have, and that is both a blessing and a curse. From what I hear a lot, one’s attitude has something to do with longevity, andyour outlook seems pretty amazing. I, too, am not at all afraid to die, and that makes everything a little bit easier for all concerned.
I wish you all the best days ahead.
0 -
Thank you, boo-boo.
Here is what I wrote on my CaringBridge about my tests today and appointment.
Today is the day I think about giving up on the medical community. Had my testing. All is fine. This has been my whole disease since 2013.
There is something wrong, I know there is something wrong, but I keep being led in the wrong direction. It's happened at every turn of lobular breast cancer.
Today is the day I want to give in and say let cancer run its course and take me. The problem is I'm too damn strong to let it take me before my time.
Now on to more doctors' appointments and more twists and turns to find out what it is.It's very weird to say I wish I was one who had cancer that is seen and picked up easily on scans. I'm jealous of those who do.
Today I choose not to be strong but weak. I will be strong again. Just not today.
0 -
KBL,
You must feel defeated, exhausted, discouraged, and frustrated along with so many other feelings. We are forced to look to our medical teams for help and guidance. We have no other path to follow. When that path fails, where does it leave us?
I was shocked to hear that the tests found nothing. It is obvious that something is wrong. Do they have any explanations for the intense pain and other symptoms you are experiencing? Are more tests planned? Can you go to another NCI center for a second opinion? What about another urologist?
I wish I could say something to make you feel better. All I can offer are my prayers, my ears to listen, and the only words I can think of.
It is unfair that your disease is not seen on conventional scans and testing. There needs to be more research into ILC and specialists devoted to ILC patients.
I understand why you want to give up on the medical community right now. It has failed you when you need it most. I hope that something happens to bring things around.
Please keep us informed about any developments as well as how you are doing physically and emotionally.
Hugs and prayers from, lynn
0 -
I gave up last September and told my MO I would let her know after the first of the year what I was going to do. I never felt better than I did those 3 months away from chemo. But then reality set in, and I decided I wasn’t ready quite yet. However, those 3 months cost me a lot in terms of disease progression. So now I’m paying the price again....feel sick all of the time, and not convinced I’m living anyway. There isn’t a day that goes by that I don’t want to throw in the towel again. I am just bone weary of this whole mess. So I know where you are, KBL,and you are allowed to be as weak as you want. Afterall, it’s our decision in the end.
0 -
50sgirl, thank you. I made a phone appointment with my nurse practitioner for Tuesday. There is no testing set from here for my abdomen. I asked for an abdominal MRI last October. Doctor said I didn’t need it. I may ask again. I was even willing to pay for it myself.
I don’t understand what this radiologist saw, so I’d like his explanation. I won’t ever get it.
Booboo, thank for for making me not feel alone in my feelings. I’m sorry you’re going through not feeling well again. It’s so hard to think which way to go. I am willing to do whatever to be there for my husband, daughter, and grandson. If it was just me, I might be okay with stopping treatment.
0
