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End of Days Decisions

mrou50
Posts: 389
Joined: Mar 2013

I met with my doctor today and we had a  talk about the end time.  I am not nearly there yet, but after reading an article the other day that was posted earlier this week stating people with advanced RCC rarely make it to five years 12 percent I believe was the number.  It got me to thinking since I am now one year with stage IV RCC, what do I do to prepare for the end of time and who do I talk to about getting things set up?  My doctor was very polite and said this is a conversation that we need to have in depth not during a regular check up so he wanted to make an appointment to discuss this.  He did however discuss some things for me to think about.  I guess to this point I never really thought about dying, and I am not giving up please believe me, I just realize now the odds are not in my favor.  Has anyone else started dealing with this issue and what did you do?  Please don't think I am morbid or giving up hope, I just want to make sure that if the end comes I have made things easy for my wife and children.  My wife says I should elaborate about what I am talking about here, medical such as DNR, my will, insurance money, hospice care etc.  I hope this make sense to everyone and I am truly sorry about being a downer today.  

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

First of all, I am sorry for all you are going through. Glad you thought to come here.

I do think your question and need to prepare for dying one day is a legitimate one. Some never want to think of it, some just deny. It doesn't mean you are morbid, but to me, I think admirable.

Now I worked in hospice. Basically hospice becomes a referral by your doctor when ALL treatment is completed for what ever reasons. A doctor has to be able to state you have a disease that will terminate your life within approximately 6 months. HOWEVER, you can live much longer than that in home hospice care.

Hospice can be provided in the home, in a skilled nursing home, some hospitals, and residential hospice facilities. It is a benefit, paid by all insurances. It is 100% free in home. But if you are not in need of pain management in a residential facility, nursing home or hospital, then you pay room and board.

The goal of hospice is  to provide for YOUR COMFORT and to prepare and support you and your family. It can be an enriching, meaningful experience.

You and your family become part of the hospice team of nurses, aides social worker, and chaplain. They are highly trained, have kind hearts and even provide support for children. 

They come weekly or every day if you need them. They are always available 24/7 by phone. They attend to your issues that may need comfort (pain meds) both physically, emotionally and spiritually. Trust me lots of contemplation and needs to support are offered.

So for now, are not terminal and  still receiving treatment, right?

But of course you want knowledge of hospice care and be prepared.

Again, I admire your fortitude. Be prepared in the future as others will tell you to keep fighting, try another treatment etc. stay strong and all that. Sometimes THEY are not ready for the inevitable.

Let me tell you that most in our American culture are ill prepared to grieve, or even pre-grieve.

With that said, learn to work WITH your body, listen to it well ( am sure you already are) meditate to keep yourself calm and serene to conserve your energy and let others know how you are feeling. Surround yourself with folks who are supportive and not annoying. LOL

Keep your self of humor and self of sense. Its YOUR life after all!

Now go enjoy the gift of TODAY!

Sending gentle hugs,

Jan

mrou50
Posts: 389
Joined: Mar 2013

Thank you for the information I do appreciate and thank you for not making me feel like a ghoul.  I just want to have everything in place before I go whenever that is.  I will keep on fighting and taking the drugs that make me feel like crap a lot and maybe someone will come up with a cure for this disease. 

 

Hugs back to you

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

First of all, I am sorry for all you are going through. Glad you thought to come here.

I do think your question and need to prepare for dying one day is a legitimate one. Some never want to think of it, some just deny. It doesn't mean you are morbid, but to me, I think admirable.

Now I worked in hospice. Basically hospice becomes a referral by your doctor when ALL treatment is completed for what ever reasons. A doctor has to be able to state you have a disease that will terminate your life within approximately 6 months. HOWEVER, you can live much longer than that in home hospice care.

Hospice can be provided in the home, in a skilled nursing home, some hospitals, and residential hospice facilities. It is a benefit, paid by all insurances. It is 100% free in home. But if you are not in need of pain management in a residential facility, nursing home or hospital, then you pay room and board.

The goal of hospice is  to provide for YOUR COMFORT and to prepare and support you and your family. It can be an enriching, meaningful experience.

You and your family become part of the hospice team of nurses, aides social worker, and chaplain. They are highly trained, have kind hearts and even provide support for children. 

They come weekly or every day if you need them. They are always available 24/7 by phone. They attend to your issues that may need comfort (pain meds) both physically, emotionally and spiritually. Trust me lots of contemplation and needs to support are offered.

So for now, are not terminal and  still receiving treatment, right?

But of course you want knowledge of hospice care and be prepared.

Again, I admire your fortitude. Be prepared in the future as others will tell you to keep fighting, try another treatment etc. stay strong and all that. Sometimes THEY are not ready for the inevitable.

Let me tell you that most in our American culture are ill prepared to grieve, or even pre-grieve.

With that said, learn to work WITH your body, listen to it well ( am sure you already are) meditate to keep yourself calm and serene to conserve your energy and let others know how you are feeling. Surround yourself with folks who are supportive and not annoying. LOL

Keep your self of humor and self of sense. Its YOUR life after all!

Now go enjoy the gift of TODAY!

Sending gentle hugs,

Jan

icemantoo's picture
icemantoo
Posts: 3354
Joined: Jan 2010

StageIV RCC is not a death sentance and the statistics from 10-15 years ago are no longer relavant. Please review your prognosis with your Doctor rather than rely on what you read somewhere.

 

 

Icemantoo

mrou50
Posts: 389
Joined: Mar 2013

I did speak to my ONC., yesteday he specializes in this kind of cancerand  is a research approved doctor he told me that the statistics were close that I read in the article posted on here over the weekend.  I asked him about the drug that was mentioned in the article that shows promise for interrupting the cancer spread. He was part of the research doctors that were involved in that he said it does show promise but is still not a cure and that now we have wait for FDA approval which he said can take a while.  As for the RCC he wants me to stay positive but he is also a realist he said he has known a few patients that have lived up to ten years and a couple of others that lived a few more than that but he said on average five years is pushing it.  He did tell me that is why it is good that I am thinking about this stuff because even if cancer does not get me I should have all of this stuff in place.  I will never give up hope but I want to be prepard for the worse just in case it happens.

cubsfan9
Posts: 69
Joined: Oct 2013

Good Morning!

First of all, the obvious...we're all going to die sometime!  It's just that cancer makes if feel much more real.

Second of all, and also probably obvious...we should all have our house in order (will, life insurance, power of attorney, etc).  For YEARS my husband and I said "we really should...(do all of those things), but kept putting it off.  When he received his stage 4 diagnosis in Dec. 2012 we finally made the appointment with the attorney and drew up all of the documents.  Thankfully, 2 1/2 years later, we haven't needed them!!  It was VERY difficult for my husband to do at that point.  I now encourage others to take care of those things before they think they need to (if that makes any sense).

As far as hospice, I know some who have done their research, visited different hospice agencies, and made decisions about what they wanted to do when the time came for hospice care well in advance.  Again, making those decisions while you are relatively healthy makes it easier on your loved ones later on.  You are also thinking more clearly and in a better position to make informed decisions.  ((Confession...have not taken our own advice on this one yet!)).                                                 ~Sharon

donna_lee's picture
donna_lee
Posts: 1018
Joined: Feb 2009

received the same message we have all been given.  The statistics, etc.  Mine was even worse, as at diagnosis, I was given a 5-7 month expected survival, unless there was a successful surgery.  And that was 9 years ago.  So look at what you can get out of the way and have completed while you are still around to be thankful.

You did not state your age, but this is a topic that everyone needs to confront.

The Big item that we had completed late the previous year was our estate planning.  So I highly recommend that be #1 on your list, no matter the size of your estate.  This will include an itemized list of all property, financial accounts, investments, personal property, insurance coverages, safe deposit boxes, debts (short and long term), business ownership, and any other assets such as time shares, internet accounts, etc. Make sure there is a way for someone to access funds for your benefit if you are incapacitated.  This should be discussed with an attorney if it is to be someone other than a spouse, as there is a difference between co-ownership on an account or a second signator on an account.

The other item the attorney can aide you with is the Physician's Directive about care.

A simple will designating who, what, when is to be transferred to whom.  You can have a trust set up if it is more complex; or even a limited liability company-LLC-when there is extensive property or income.  Don't forget that internet properties, such as Facebook accounts cannot even be closed by another person.

Meet with a person at a funeral home to determine what your desires are for any service, ceremony, or final orders.  Take a family member with you who will probably be the person called upon to work with the home.  They will provide a planning booklet that will let you make choises.  A price list should be supplied to you at this time. 

Then there is dealing with the living aspect.  Be your own advocatem medically.  Ask questions.  Join a support group for cancer patients.  On line or in person.  Much of what all cancer patients experience is somewhat generic in response to dealing with drs, effects of drugs, how to handle the effects, the emotions of treatment, the fears and anxiety. Your family or caregiver can attend some of the groups, and they should be involved in your care or treatment.

I too, have been a Hospiice staff member, but as a trained volunteer who worked with patients.  I have also been a ficilitator of our local Cancer Survivors Support Group.  Hospice does have a very viable and critical roll to play in end-of-life care, and you need to be aware of how they can assist you and the family.  Some communities actually have residential e-o-l facilities.  Others, as in our region, allow the patient to stary at home, whether it be "home", assisted living, or nursing home.  They come to the patient.  This past year, I was the family member/hospice volunteer, etc. who dealt with the final 6 months of life for my mother-in-law.  I was an intimant member of the care team during her last 6 weeks, under Hospice care, and worked with them and the residential staff to make Grandma's life meaningful, safe, and as comfortable as we were able.

States have different laws regarding patient choices on end of life care.  This should be explored with your attorney and/or physician.  Due to current financial regulations imposed upon Medicare/Medicaide, Hospice may not be brought into the plan until it is certified by the attending physician that there is 6 or fewer months.  At that time they will cover costs of admission, visits by nurses, care staff, and palliative medication (pain meds such as morphine).

NOW...the big question to you is what will you do if you don't die as the Dr. has provided stats for.  There are lots of us you continue to live as Chonic but Stable survivors who have been diagnosed with Stage IV Kidney Cancer.  It's not all gloom and doom.  I've taken numerous trips, enjoyed my grandchildren, started new hobbies, enjoyed working in my yard, and still have a half-day job.

Deal with what you have to deal with, then get on with enjoying the time you have.

Hugs and good luck.

Donna

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

mrou50,

     Wow, I really don't know what to say, except that it seems my time is almost up! I have been dealing with stage IV kidney cancer for 4 years on August 3.  So for me to think that I may only have 12 months left, NOT! We are all going to die, some sooner, some later, and whether we want to take the time to make sure our loved ones are taken care of is very important to all of us.  I do understand what you are going through, I think my first year I kinda walked around in a fog and really can't remember much about it.

   I had my right kidney removed the first year, lower portion of my right lung after 2 years, and 2 brain tumors removed, one in November 2013 and then the other one in April of this year.  I still have scans and  MRI every three months (still get horrible scanixety, which is coming next week), but in the meantime I am living and smiling every day.  I guess we have prepared for the last moment when it comes to all the paperwork.

   I don't think you are being morbid, but I will leave you with one thought, your Doctor said that the 12% was just about right with Stage 4 Kidney Cancer, well guess what, someone has to make up that 12% and I am planning on be one of the ones that do!! See you there mrou50!

                                           Prayers for good health!

                                            Brenda 

mrou50
Posts: 389
Joined: Mar 2013

Thank you to everyone's great words of encouragement.  I guess the hardest thing for me to think about is the unknown, I don't want to leave anything to chance.  Right now except for the side effects of the Votrient I feel great in July of last year when my RCC returned I went from one small tumor on my lungs to six in three months two of them pretty large.  When I heard that it shocked me how fast and how many grew, now the Votrient has made two of them dissapear and the other four have shrunk in size.  My doctor told me that Votrient only works for so long and then we will move to the next treatment probably IL2 as a teacher I can't imagine working after IL2 and what it does to the body.  When I ask my doctor about these things he says the same thing, he wishes he could give me definite answers on everything but each case is different, he does not know when I should consider not working anymore, by the way someone asked me my age I am 50 for two more months.  I am just now coming to grips with my mortality and maybe I will not die in five year (hopefully) but I just thought maybe I should be prepared legally, spiritually, and physically.  I see so many interesting stories on the discussion board and I think to myself how do these people not worry about stuff.  Fox a couple of months ago I was worried sick about you it seemed like you might have been facing your own mortality but you have bounced back and that gives me such hope.  

I have always been a person that has a plan in place and a back up plan to that, I hate this disease because everything is uncertain my school district wants to know how long I can go on, and when I asked my doctor yesterday he said at this point it is year to year that there can be no strict timeline given.  Until I read that article I just thought Okay some day I might not be around than that article really opened my eyes and made me think that I have got to get things together and get my plan in place as for how much time I have to work, or to live I wish I had a crystal ball to tell me so that I could tell others.  Right now I am living my life day to day thankful for each morning I wake up and treat it like a blessing, I am doing the things I want to do and I will continue to do so, but doesn't it frustrate you guys this damn uncertainty?  Again thank you for all your help, and I am sorry I have been on a rant the past 24 hours. 

Mark

angec's picture
angec
Posts: 924
Joined: Mar 2012

Hi Mark, just reading your posts.  I looked at your bio and when i read it i got angry. You were urinating blood for FIVE years and not one doctor thought to give you a scan?  Did you see the same doctor each time for five years?  I would like to have his license taken away and sue his butt to Kingdom come! I am sorry that sounds awful.  But, five years dealing with a tumor that could have been handled early on is infuriating. I hope and pray this is not the same doctor you are seeing that says you would be lucky to live for five years.  There are many people still living after five years and plenty of treatments out there if one doesn't work!  Kidney cancer has become a chronic disease and managed as such. Sure, some do lose their lives but more are living too.  

My mom who is now on her way to 83 in September, had stage 4 cancer in March of 2012. The doctor told me she most likely would not make the year. She has been on Votrient for almost three years now.  The scan before last she was NED!  That was after having several tumors. Her last scan said two small spots are active again but the doc dismissed it because they are still the same size as they have always been and the SUV was low. I am hoping he is right.  But the point is, no one knows how long anyone has. In this day and age, with all the new meds, the new technology and constant surveillence, no one can say for sure how much time anyone has. There are doctors out there that don't have too much knowledge of new meds and new technology.  You have to stay on the boards and learn about the new things coming out, what others are taking, the trials, the meds you can get off label etc.  The patients here know more than some doctors.  I am not trying to be mean or take away and of the docs skills. But i have seen it with my own eyes where a doctor will say something that i know is not true, simply because he or she has been so use to using the same medicines, the same technology and never moving on or investigating the latest.  I hope your doctor is one that is very experienced with RCC. If not, feel free to get second opinions.  Get a copy of all of your tests and scans and read them yourself as well. Make a nice folder if you haven't done so already.  

Everyone, sick or not needs to have their affairs in order.  We don't know when the next tornado, earthquake, flood or natural disaster might strike and end it all.  Look at the woman who was sucked into the escalator two days ago.  So, one never knows what can befall us.  I am going to say that you get your ducks in a row just for the sake of doing it and then take the advice of the others here on these boards. Live your life, because tomorrow is not promised to any of us, cancer or not!  Hugs to you and your family!

 

PS.. there are links on this board that deals with side affects of Votrient / Panzopanib if you do a search for it. I think i reposted it yesterday.  It can help you with the terrible side affects that are common with the treatment.

Also, you can join smartpatients.com  which is another forum that has all the latest information and very experienced people running the boards.  Hope this helps.  Chin up!

Angela

mrou50
Posts: 389
Joined: Mar 2013

I actually saw numerous doctors during the five year period the problem was most of them were with Kaiser Insurance. It was actually when I no longer had insurance that a doctor who I paid cash to visit and not a Kaiser doctor told me that he wanted a scan but before the scan could happen all hell broke loos in my back.  My ONC is a research doctor and RCC specialist he does let me know about new studies the problem is I live several hours from the Portland area and to be in the studies I have to see him more often and get more scans which means less time at work, I can't afford to lose my job or more importantly the insurance that goes with it.  He didn't say I only had five years he just said that is an average that is generally correct but that with proper treatment and if my body responds well to the drugs I can make it longer possibly he just does not want to make promises that he can't, I wanted a cure or a promise of many more years and he is a realist and wants me to be too, he says getting my affairs in order now while I am thinking clearly is important but our goal is to keep me alive and comfortable as long as possible, or as long as I can stand the treatment.

 

Thank you and everyone for your support, I am feeling better today I just went through a what the heck time over the weekend and was mad at the world that I got this disease.

 

Mark

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Even experts disagree. In the LA area I've seen 3 RCC "experts" and they've all had different opinions and attitudes and some were more optimistic, some more pessimistic. If possible, I'd always suggest checking in with another expert to see what they have to say. If there are none in your area, it might be worth a trip somewhere else. It's lovely weather here in LA right now, and there are RCC experts at 4 different hospitals in the LA area that are all great (USC, UCLA, Cedars Sinai, and City of Hope).

Early on I saw a regular oncologist who wasn't an RCC expert, and he gave me just plain bad advice. I'm so glad I saw not just 1 RCC expert, but 2. They had slightly different ideas about what to do, then I made a decision. But I felt so much better knowing what was a consensus, where there was disagreement, and why, and I felt I had information to make a decision.

Insurance companies very often will pay for second opinions and even (I think) for travel to the place needed for an educated second opinion. Even if they don't, it can be written off your taxes. Usually you would send all your records and scans in advance, so seeing the doc itself would just be a 1-2 hour ordeal.

I'll answer your other question about what I did to get ready. I'm Stage IV also, but recently diagnosed with NED at this point after tumor resection.

Best to you.

Todd

P.S. Even though some of the new drugs aren't FDA approved for RCC, they've been approved for other cancers and I think your doc could give it to you off label. Of course I'd make sure insurance will pay for it. That may be the issue.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

A research biologist, always points out that these stats ar totally out ofdate and that reseach has moved on massively, I know what you mean tho. I want a godless funeral and have no idea of how to arrange one.

Anyway the bugger aint got me yet. Aint gonna get ne tomorrow either!

a_oaklee
Posts: 567
Joined: Nov 2013

Hi Mark.  This is a good topic and I am glad that you brought it up.  We have currently been given the same statistic as you regarding survival of stage 4.  We were told the statistic is based on Treatments 5 years ago.  I know treatments have improved and there are more meds in just five years time.  Everyone talks about all the people who have lived well beyond the 5 years, to offer hope.  There are also others who did not live 5 years.  I won't forget about them either.  The truth is you don't know what will happen to you as an individual.

my husband was diagnosed 3 1/2 years ago at stage 4.  We saw a financial planner for advice and ideas.  We saw our attorney to update our wills and advanced directive, and medical power of attorney.  We are selling things we don't need anymore.  We are downsizing.  

I know what my husband would want re decisions on medical care, if he couldn't decide himself.  We have had talks.  When we saw our attorney there is also information in each of our wills regarding burial.

I remind my husband that these are all things that needed to be done because of our age, and not because of cancer.

i hope I have answered your question.  I wasn't sure if you wanted specifics.  We talked with eachother about what my husband would want to give to which kid re keepsakes.  Our family doctor suggested my husband making a video tape speaking from the heart for them.  We haven't done that.  Probably won't.  Kids are grown, we are close, and they know they are cherished.  

I really can't think of anything we still need to do ....except downsizing.  We need to move to a smaller house.  I wanted to when the kids left home anyway.

 

a_oaklee
Posts: 567
Joined: Nov 2013

Re disability and working.  I think you will know when the time is right.  Understand your medical insurance options.  My husband still works a couple hours a day, because he loves it.  I am surprised your employer is asking you how long you plan on working.  I thought that teachers worked With a yearly schedule.  

One more thing.  We also discuss all the things we would like to do, that we have put off for various reasons.  Vacations!  

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I think everyone did a heck of a job talking about the emotional stuff. I'm not going to address that. I want to just say the things I did when my cancer was diagnosed in order to try and make things easier for my family.

1. Had a will prepared. Talked to my family about who would be the executor (asked my son who is a lawyer) and who would make medical decisions for me (asked my ex wife) and talked to them about what I wanted in terms of medical treatment. I made a separate list of property as to who got what for things not in the will (family things I wanted to go to certain people, for example).

2. Prepared an Advanced Medical Directive.

3. Created a Trust and put my house and all my bank accounts and brokerage accounts and house into the Trust. (My work has a legal plan you can pay monthly for and it was fairly inexpensive to do the trust and will).

4. Went through all my life insurance beneficiaries and made sure they were up-to-date (who gets what and their contact information).

5. Made a list of all my accounts and account numbers (life insurance, bank accounts, brokerage accounts, etc.). Separately I emailed my son a list of all my account names and passwords so he could get into them including my cell phone password.

6. Made a list of everyone I would want my sons to notify should I pass away and how to contact them. I tried to make it convenient (for example, I know that in a group of friends, only 1 friend would be needed since they would notify the other friends).

These were the things that I felt were important to me. Hope something here helped.

And I pray nobody needs to do anything with this for a long time for you or me!

Hugs,

Todd

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