A place to talk death and dying issues
Comments
-
1st off- i love this post! I am not near the end yet but like many of y'all said you know its looming ahead. I have so many thoughts and fears about dying so this post is truly a blessing for me to read. (i never talk to anyone about it so i dont sound morbid or something)
Imbell- that is pretty crappy. Even if you had a larger family that is a lot of death in a realativly short time. I agree there isnt enough out there on tv for us to gain from. mostly the feel good stuff...
Ma111- i am going back home to visit and want to do a huge bbq/party because a lot of these people i havent seen in 10+ years, but i am afraid its going to turn into one of those "lets see her before she passes" type of thing... Is it wrong for me to start lying and tell people i am "all better?"
I have been putting off talking ewith my dr about putting me on an anti depression med- but i am def going to ask on my next appointment which is monday- i just feel that i cant handle the depression myself... i dont want to do anything, i look at my dishes and it make me more depressed!
thats-life- i get that a lot too "oh dont say that, you'll be around for YEARS" I want to talk and work through my feelings! I think its too hard on our loved ones to even think about it let alone say it outloud. Take up knitting LOL thats too funny!
Chickadee- Sounds like you're related to me! I have a lot of "winners" in my family too! Good for you to stand up and send your mother off to your brother- i cant beleive that no one in your family offered to take care of her knowing what you're going through!
Coolbreeze- LOL i wanna get my affairs in order if it means Brad Pitt LOL- thats my thing too i need to get rid of stuff- like why i am i holding on to a lot of this stuff!!!!
Lori- i do write in a journal 1 for the kids and one for my husband. i have thought about the video messages but somehow i cant bring myself to do it. I think to myself that NOW is the right time- i am health(ier) my hair is grown in and i look good (dark circles under my eyes have gone) so if i am gonna do a message it would be now, but thats as far as i get.... When did you write the birthday cards? Right at you dx or more recently?
FightingF8- OOOOh that boils my blood! Of course we are all dying and i hate when people say that, i wanna say to them "i wasnt aware that you have diblitating joint pain too!" (or something else that i am going through at that moment) Because our dying comes with so much more than someone AGING (not dying!)
Kezzie- that sounds good- i may have to do a memory box... or maybe memory videos (like telling my fav memories on tape)
Pam i get that too- my last scans showed stable and so everyone is like "well thats it!" no sorry that not it, i will still have to do treatment to keep them stable and God forbid there is any progression! BTW happpy to here youre NED- question about your comment since you're on hercepitn brain mets wil lbe the culprit- explain LOL i am on herceptin too does that mean brain mets are more common for those on herceptin?
0 -
Chele- thats a funny image your husband in your dress LOL
I like your idea about putting together your favorite psalms for your funeral. I really am going to do a video sometime to be played after i die.... i am going to use pictures set to music, honestly i want to do it A- so they dont put in some crappy pic of me looking all gross LOL and B- it will be too hard on my husband to do something like that....
Okay this is so funny i thought i'd share. My daughter got me a card for my bday that was shaped like a pickle, on the inside it said "Bet you didnt expect to get a paper pickle for your birthday" I want to get some made that say "Bet you didnt expect to get a paper pickle at my wake" And i want to sign all of them... Leave the other side blank so they can add after i pass all the information. Reason being is i got that card when i was going through chemo and it was towards the end and i felt so crappy but when i opened the card and read it i laughed the biggest i had since my dx and it was one of those laughs that i just couldnt stop LOL you know where your whole abdomin hurts from laughing! Of course people are going to cry when i die but i want them to LAUGH! to remember my funny side...
0 -
Thank you for this thread.
I'm much like Pam in my status - Stage IIIc with TN that was chemo resistant by the end of my therapy. I still have a positive node that we are treating, and while I am currently NED everywhere else, I am realistic and so is my doctor. We are just trying to buy time.
I'm really trying to get my DH to talk about my death and its consequences, and it is hard. He travels for a living and LOVES his job. I stay at home with the kids. We don't have any family where we live. He is freaking out a bit about the idea that he will have to change his career and stop traveling, and he is terrified of being a single father. So he just doesn't talk about it much.
My mom, who is staying with us, also won't really talk much with me about it, my wishes for a funeral, things I want to accomplish before I die, the bucket list car I just bought...she just can't cope well with the thought of losing her daughter, and will only focus on me living until told otherwise.
I feel like I'm walking a knife's edge, in between life and death. I have no real reason to be hopeful that I will beat this, except so far I am, but I can't start planning for a different fight because I'm not there yet.
I don't have any answers, but it is good to read everyone's response. Thank you.
0 -
Well Timothea, the deal with Herceptin is that it doesn't cross the blood-brain barrier. So it could be working great on your body from the neck down, but you could (and many do) still get brain mets, even after complete pathological response.
But! I have two strikes against me that lower my chances far more than most people. The first is IBC, which you will always see quoted as "the most frequently fatal and most aggressive form of breast cancer". This is because it moves so fast that you can get a recurrance while in rads, while in chemo, or literally weeks after a complete response.
The other is my Her2Neu status - my cancer cells are far more positive for Her2 Neu overexpression than are most people. Which is great in theory with Herceptin, but not so great about the brain...
So, I guess what I'm saying is that you should get scans periodically, but I don't mean to scare you and say "everyone who takes herceptin will get brain mets" at all. It's just not the case.
Like a lot of us, I'm just hoping to buy time for the Next Big Thing in cancer treatment. Normally I'm pretty hopeful about it all, but every now and again I have to bring my head down from the clouds and face icky reality.
0 -
Timothea- I started all my projects which include to all my close family/friends and my husband when I was diagnosed stage IV in 2009. I had all the kids birthday, confirmation, wedding, baby, etc cards done the first few months after my diagnosis. I would sit in my room and do a few at a time when I had a chance. The younger birthdays don't say a lot, but I love you, you are amazing, etc. With the older birthday cards, graduations, weddings the messages got longer and deeper. it was not an easy task. I cried a lot!
Susan, haha, thanks.
Another thing I did which was important to me because my kids are SO YOUNG.....I went to Tiffany's and bought them each a special gift.....both crosses which I had engraved to be given to them when my husband thinks it is appropriate....teens or so since they are not exactly inexpensive. I just hope my husband doesn't forget to give the gifts!
I have what I can an "instruction manual" for my husband when I kick it. It has i with different subjects of things i do now or wish him to do in the future. I am such a flippin control freak!
I was a "weak" stage IV from the start but knew I would eventually have big preogression which I did this past February/March. It was nice that a lot of my projects were done, but I am still working on more. I think of or find new things to do all the time. My kids are going to be sick of me even when I am not here! haha!
One thing I have not done is address what I want done at a funeral/memorial, etc. I have faced a lot, but that is a topic I just don't want to think about. I feel bas as I should make it easier on my family, but I just can't do it.
0 -
PaminWV,
Your complete pathological response actually gives you a really good chance of staying NED for a long time, if not forever. I know how you feel, don't get me wrong, but you had the best response possible for an IBCer. Don't jump to giving yourself brain mets just yet. That being said I understand youir worries. I would go by the motto "expect the worst but hope for the best" and enjoy LIFE!!!
Hugs,
Lori
0 -
I'm intruding in your group to post this cautionary tale: an acquaintance of mine, a lovely man, died of cancer last year. He had a particularly aggressive type, and despite chemo and rads he succumbed in little over a year. He did almost no preparation. I don't know if they were hoping for a miracle or what; I do know his family kept him in fight mode. His wife, especially, was a wreck over his diagnosis, and maybe she didn't want to face the fact that he was dying. Also, if I were him and had to face the fact that I'd never walk my beautiful children down the aisle, never see my grandchildren, I might be in denial, too.
I won't go into details because I don't have permission, but suffice it to say that the aftermath was a mess. I've come to the conclusion that preparation is one of the best last gifts we can give to our loved ones. My husband and I have a will, POA and directives in place; my insistence, when he presented with heart disease. Even though I have a good prognosis, I have done things like make sure all my retirement accounts go to him, if I go first: he will need the money, I've decided, if he lives a long time, given his health issues.
0 -
As long as your requirements aren't complex, Legalzoom.com is a great place to create your various documents. I have used it and found it very good. POA's, both durable and medical can be done very inexpensively there.
0 -
My biggest fear is dying and leaving my two kids behind without a mother
0 -
Suze- i think thats the same reson why my DH doesnt talk about it either- they dont want to think about being the sole parent
... Also my mom was acting like i was on my death bed @ dx! She is so dramatic- which remind me also my brother in law was SO weird right before i started chemo he was trying to get me to sign over custody of my kids to him! (this is my husbands bro) He is in renial failure and goes through dialysis 3x a week so how is he more capable of taking care of my kids than myself?! (or my husband for that matter lol)Pam- thanks for clearing that up. Because of my stage i do get routine scans done and so far no brain mets and i dont really think they'll work their way up there lol (or i hope) i do have lung and various bone mets though....
lori- yeah i cry when i write in the journals... I idd write my daughter a very poignant letter when she was only a few days old (so 5 yrs before i was dx) i need to let my husband know where that is LOL to maybe i will leave an instruction manual, just with basic things like where i keep the warranties on everything LOL or else he wont know!
Chickadee- i am def gonna check out legalzoom, i've see thier ads but havent taken that step to do it but after reading memory's story i think its important to get that stuff together before anything serious happens.
0 -
Excellent thread. Thank you. ma111, for starting it.
I do have a living will/advance directive/power of attorney which gives my Pack Rat the authority to speak for me medically if or when I can no longer speak for myself, and since we've talked about it, he knows what I would choose to do for particular medical situations. His name is also on my checking account (the only money I have, and it's only just enough to live on) so he can pay my bills and rent for me if necessary, too, or if I can manage things tlll the end, just claim whatever's left, if any, when I'm dead and have no more need of it.
I have very little of real material value, If I was going to die today, which I doubt, the only things I have which anyone could use or sell would be a 5 year old Toyota Corolla, and some 1995-2005 era Macintosh computers. I have no houses, no investments, no insurance, no jewelry. I also have no children to worry about, thank goodness (getting spayed may very well be the smartest decision I ever made in my whole life! LOL). I actually started to write a will but haven't finished it yet. I know I want my Pack Rat to have the car and my Macs -- he doesn't need them like I do while I'm still alive, but he might find them handy for something down the road -- and my clothes can go to Goodwill, but I don't know what to do with MY music (archival master tapes of the seven albums I composed and recorded in the 80s) or my rat collection. I guess leave them all to him too. And on top of having next to nothing that's actually worth any money, I don't even want a funeral service -- I'm not religious and I hate funerals because I think they're an expensive ripoff, the funeral industry taking advantage of grieving loved ones when someone dies. Good thing I feel that way because it'll probably use up all I have left to pay for a cremation! (and you'd think I'd look into arranging that too, right? wrong!)
So I don't need or want all that much, I'm worth next to nothing in terms of material value, so it should be an easy document to finish it. I'm not usually a procrastinator either; I'm one of those disgusting punctual prepared types. Like today for my appointment with a new eye doctor, I showed up ten minutes early with the glasses and contacts I presently wear and a list of all the medications and supplements I'm taking -- yeah why would an EYE doctor want that?! The lady who called to confirm my appointment asked me to "bring all your medical information," so OK -- hell I'm a terminal cancer patient so I keep a list in my computer which I regularly update as applicable, and bring a printout with me. And I'm such a gloomy and doomy person anyway, as in eternal cynic and pessimist, wih a mad scientist black sense of humor and was like that for about 15-20 years prior to getting cancer so it's not like I only got morbid when I came down with a serious disease -- so what gives with me on this will thing?
And yes, I bookmarked sites with willmaking software within weeks of my diagnosis (Stage IV out of the gate), which I plan to use after I finish writing "The Final Frontier."
Imbell, please accept my sincerest condolences for all your lost family members.
0 -
Lori, I just got back from my Oncologist - the first time I've seen him since surg - and he explained what the complete response meant in terms of prognosis. I knew it was good but didn't know it was that good.
You're right, I need to get my head out of my butt and go live!!! Right now I'm too stunned.
0 -
texasrose - it is such a scary thought, I know, that I cut DH some slack. He's trying to work through this just as I am. But it makes it hard when I want to talk brass tacks, like "this is how you pay the bills!"
This conversation is great - Lori and Lena - you bring up very important things that should be addressed. I need to get started on the stuff for my kids, pictures, videos, cards, gifts...and I need to do the important things, such as a will, as well. I'm like you Lena, I don't have very much in my name - we do most things under DH's name, it is just easier. But my car, my jewelry, my shoes (my shameful indulgence), all need good homes.
I did give my sister a pair of my shoes and a necklace the last time she was here. It freaked her out, but I told her that I wanted to actually see her enjoy them.
I'll have to check out that legal website. Our will would be pretty straightforward.
0 -
Memory,
Thanks for the post. It is nice to hear postive things about why I have my final things in order. It is so hard for people to understand we do this so that our family does not have to, especially those of us who are single moms.
I would rather have a good prognosis, but we don't always get what we want in life.
PaminWV,
I have also read in a few places that the IBC is the worst, escpecially with the er&pr-. HER+. My tumor didn't show up until a few months ago and it looks like IBC with skin mets. I presented with swollen nodes in 2009. I am also on Herceptin and thinking it will be the brain mets that will get me from what I read. I have much considered no treatment for brain mets as I want to function and keep my drivers liscence and like being able to walk, etc. I feel as if I have lived a long functional life for the dx and path report. Don't you hate it when people tell you they know people that have lived 10 or so years with breast cancer being treated as a cronic disease. They just don't understand that the subtypes are different and they won't let you explain crap to them. I am getting to where I feel like being scarstic with them, but don't want to hurt their feeling, but they are hurting mine. Such a frustrating thing.
I do hope you stay in NED for a long time. Consider some vaccine trails while you are in remission to keep you there. clinicaltrails.gov. I have had good results with one at the NIH. In July they are starting a vaccine only trail.
I do need to write my daughter some letters, I will cry on that one.
Lena,
my sister can take a loan out in my name jusy in case there needs to be some bills paid. My life insurance will apy off my house and my 17 year old daughter can live in it.
0 -
PaminWV,
I did not at all mean to minimize or dismiss your feelings, and I hope you didn't think that is what I was doing! I know as well as anyone the aggressiveness of IBC. I have spent the last two years reading everything I can about this disease and talking to many other IBC patients. My MDA onc quoted a study to me about patients who have complete chemotherapeutic response, and I was surprised by the positive statistics (for once!)
I wish you a life long dance with NED. If an IBCercan do it, based on what I know about your path report, it's you!!
Lori
0 -
Those of you who are stage III, I hope you are keeping your optimism. I'm not sure you need to be posting to death threads yet!
You have a 49% chance of being around in five years - Stage IV only has a 15% chance.http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-survival-by-stage
I do believe it's important to be realistic but lots of women at your stage have a complete response and end up NED so while it's good you are being realistic, you don't want to be TOO realistic!
Prepare, sure - it's what I did when I bought that life insurance even thinking I'd be cured - but plan to be in that 49%.As far as herceptin and brain mets go - 50% of women with metastatic breast cancer end up with it in their brain. The other 50% don't. However, Tykerb does cross the BBB so maybe you all can consider getting on that?
I don't know that I need a will. Everything will go to my husband. I can designate some jewelry for the kids, although I have boys, I suppose. I should do an advance directive though. My husband is a great guy but very passive. He is not going to ever argue with a doctor, he's not going to demand or ask for anything, he won't do any research or question anything, so I'm going to have to make sure I spell it all out as plainly as I can.
The problem is I don't know what "it" is yet. Except, of course, a visit with Brad.
0 -
I prepared everything that I could last year, including what to do with my body. I was sad that I couldn't be an organ donor anymore. But then I found a program through our local teaching hospital (University of Washington) and I willed my body to them. They will pick it up at no charge to my family, and it will be used as a cadaver for medical students. Or, they may just harvest certain organs or whatever for use in teaching. Whatever is leftover will be cremated and either sent to my family if they chose that, or buried along with others in a non-denominational service that all the med students attend each year.
My friends think it's a little nuts how happy I was to find this program, but it has brought me a lot of relief. I like knowing that my body will be put to good use. I like knowing that my parents have the number to call and the body will be taken care of. I like that they won't have to deal with a funeral home and pick out a casket or whatever. I think my mother will probably still have a service of some kind, but I've told her that's for her and she can choose to do it however she wants. . . I'll be gone, so it doesn't matter to me if she wants to do a church thing or outdoor party or anything.
0 -
Cool breeze - not a Brad fan, but im plotting my Gerard Butler weekend, lol.
I do appreciate your words about still being Stage III...it resonates. Unfortunately my odds are a bit lower due to TN and chemo resistance...probably 20-30%. So I'm trying to be prepared...but I do have still have hope!
And if I'm lucky, a weekend with Gerard...0 -
All of you ladies are amazing! When I thought I was on my way out last year, I did the health care directive, cremation plans, and will from my hospital bed. And I lived!
At least I don't have to worry about all of that paperwork now. But I am worried about what will happen if I become very ill again. I'm not married, but I have a sweet partner of many years who saw me through last year.He's freaked out whenever I talk about death or dying. I don't want him to have to take care of me and watch me deteriorate, so I'll probably end up in a hospice house. Not sure how I feel about that either... It all seems very surreal. I have lost both parents and many others along the way, so I'm not unfamiliar with death. And I'm not in total denial because I address these things but still... wow... anyway... I'm currently NED and holding on tight!Love to all...
Rose.
0 -
petjunkie, i felt the same, sad that i couldnt do organ donation..i like your idea, i am glad you found something you are happy with.
0 -
Pamin..I understand how you feel. No one wants to talk about this stuff but us it seems.Something I do for those I know love me to pieces but cant handle discussing my funeral etc is that when we are all together, say at a party or just chatting while playing cards...I will bring up someone else who has passed. While speaking of their funeral..I just casually say things like how much I liked that type of service. Or which funeral home is my fav etc..Just over time I do this. I have a sis in law who I know will remember these things. I am certain she will be a part of planning services etc. She will make sure my clothes are all matched with my earrings, etc. LOL..Other than my hubby and kids all I have left is cousins and an uncle. I have 2 cousins who have been there thru thick and thin but one of them is technically sicker than I am. She has lupus and her kidneys are starting to fail. So my hubby will most likely turn to his sis for help. His sis also had a great idea that I think I will help get started. She thinks it would be great if instead of waiting for each of us to pass away...give eachother some special momento now. Maybe even give things like that at xmas instead of store bought gifts. I have some things picked out for her specially since we have gone thru alot together. HUgs and LUvs, Mazy
0 -
Coolbreeze, be very careful. If you're in California, and you have no will, your husband won't necessarily get everything, since you have children (for certain types of property, he'll get half, if you have one child and a third if you have more than one!). Chele says she doesn't need a will since she lives in Kansas (apparently she likes the distribution provided for by the intestate succession statute there.
Every state's version of intestate sucession is different. If you don't make a will, the state supplies one for you (in the form of the intestate sucession statute). If the intestate succession statue changes in your state, so does "your will" (if you haven't made one for yourself). If you decide you don't need a will, be sure to monitor any changes in those laws!
There are other advantages to having a will (even if you do like your state's intestate sucession statutes). You can choose your personal representative/executor. You can provide that they can serve without bond (if you like); otherwise, they will have to purchase a bond to protect your estate, and typically the cost of the bond will come out of the estate. You may or may not want a bond to protect the estate, but if you don't write a will, you don't get to choose.
You may want particular things to go to particular persons. That's not something that can be accomplished if you rely on the intestate succession statutes. Please consider consulting an attorney in your state about whether you should want a will. Your state's bar association may publish a pamphet on the subject, as well.
Best wishes to all of you!
LisaAlissa
0 -
I don't even know where to begin. I don't raise the issue and my wife doesn't raise it often either. She has no will. We have life insurance....when I was 32 my 30 yr old wife died from complications in child birth, so I made sure we both have insurance. We still have two kids at home, 12 and 15. Not gonna say money won't be an issue, but I will be able to pay off the house and should be able to pay the bills from my income. I have a good job. We need a will but I havn't wanted to broach the subject. A living will also, because she has told me that she doesn't want to hang on at the end...but that hasn't really been defined. I have no idea how my bride would want to be burried, or where.I know this needs to be discussed, but I don't want to bring it up. We are planning a vacation with our children (including the 21 year old) at the end of the year. My wife is also applying for a promotion. We spent the evening tonight going over possible interview questions. Maybe we are sticking our heads in the sand, but I am glad she is being positive
I know we have to deal with these things because her health could turn on a dime. I just don't know where to start. Or how.
0 -
hi pizza dad, i just want to say feel free here to discuss anything you want to discuss, i know ma111 wants a place where we feel free..so do i
You have had it hard, and i wish you many more enjoyable years together with your wife. I wish i had someone like you!, willing to be a true partner, even when it comes to the hard questions, and things that need to be addressed. A living will is a good idea..i have mine in a draw ready to fill in with my gp when im ready..its hard isnt it..i forced myself to write a will with my brother, who came down from queensland to help me get those things happening...one step at a time.. 0 -
just want to add, i said NO to my appointment this week with my psychologist, and felt great about it. I want some me time. I have had 9 months of appointments/referrals/scans/sessions with her..im taking some time out to think about me. and do nothing, if nothing is what i want to do
0 -
This has been a very interesting discussion. It seems I always see things differently. And this may have been mentioned before, but here's what I'm doing...get the plot, and the funeral home and I wrote my obit since I know DH wouldn't be able to name some of my relatives. DH and I discussed and said he would want to plan psalms, readings, planning other stuff because really, I'd be gone and the funeral is really for the loved ones left behind and that he wants to plan it because it would help him grieve...by planning and deciding what he thought I would have wanted. He said if it were all planned, he'd just go through the motions of going to a funeral and not be involved. I thought that was pretty cool and I'm totally okay with it if it will help him and my kids.
0 -
Just FYI.....a durable power of attorney for healthcare is more important than a living will......at least here in Ohio. A living will only comes into play if you are declared brain dead by two different physicians.
Like I said this is the case in Ohio.
Lori
0 -
Apologies, Off the Topic:
Lori, I didn't think you meant it that way at all. I know you know about IBC and what it can do and how fast. I wish neither of us had ever heard of such a thing, but you are braver than I. The info available about IBC is scary, sad and depressing, like the 12 yr old girl who died from it. I really believe IBC is caused by injury, including surgery, to an existing tumor - I think my injuries were caused by my mountain bike wrecks.
The other reason is that the best and newest knowledge about IBC isn't necessarily available yet except to networking healthcare practitioners, with the two clinics it's changing so fast.
Anyway, please forgive me, all, for hijacking the topic, especially such a vital one.
0 -
Steelrose! I KNEW I forgot something! I'll have to find a hospice house that takes nearly indigents, though. But I'm sooooo with you -- I do NOT want my Pack Rat to see or deal with what's left of me if I get all debilitated!
0 -
Petjunkie- i love that idea! i wonder if them Huskies would want to come get my body from texas??? (i am a transplant org from Oly...) Maybe they can learn something that saves a million lives!!!!
Pizzadad- its not really sticking your heads in the sand as much as living life to the fullest. I am 28 mother of 2 and my youngest starts school this fall, what do you think my stage 4 butt will be doing???? If you guessed going to college to get my RN degree (or whatever they call it) you'd be right. Its a 2 year program and right now i am feeling well enough to go to school, so i am!!!! Oh i know that i might not "make it" through my class but eh what if i do LOL
Lifestooshort- great perspective.... i am glad your husband told you that. i think i will plan everything for "just in case" so if he doesnt want to do it he doesnt have to, if he does then no worries
I dont think i want my kids to see me dying, but for clousre it might be best...
who knows we'll see how old they are when the time comes- if they're still this young i prob will go into hospice... I doubt my husband will let me though- he doesnt even want me going to WA for a 2 week vacation (bought my tix today) he is already depressed that we are going to be apart for 2 weeks- come on we've been married 10 yrs 2 weeks isnt a lifetime! LOL0
