Spouse Diagnosed Non-curable Cancer -- what now?

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Nuvoletta
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Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Wed Oct 31, 2018 8:51 pm

My husband just received a diagnosis of a "rare" type of non-curable bone cancer (non-Hodgkins lymphoma "WM"). While the 5-year outlook is promising for patients like my husband who are otherwise in good health and under age 65, after that it gets highly variable and the 10-year outlook starts getting grim. We are on a steep learning curve. We feel generally confident in the diagnosis and we will follow the recommended treatment approach based on our research (wait to do chemo until symptomatic bc won't cure, just delay, the final outcome). We are seeking a second opinion at MD Anderson. DH is 61, I am 49, our 2 kids are pre-teens.

Background:
- We are not FIRE because we started saving late, but we have good FIRE habits over recent decade and up until a month ago, we were discussing a 5-year plan to be FIRE or at least "enough" to consider retiring (him by FRA at 67 and me maybe at same time, but not taking SS until 70).
- House paid off, we own a rental that pays for itself and generates income after expenses, one car paid, another with 5 thousand at 2%.
- We have a liquid 6-month emergency fund.
- We owe a family member a remaining $31K to buy them out of a family house in another country. We were going to cash flow that amount through 2019 and still can or I can do a 401k loan at 6% if I have to. Not worried about this debt and that house is where I would take him and kids if he went downhill suddenly bc his family would help us (we have no family in US). Family house was one retirement scenario, we visit almost every year.
- Both of us have good health insurance through my job, I have FMLA benefit if needed and both of us have long-term disability insurance.
- Life insurance-wise, I am comfortable with our coverage based on our ages, and so glad we have it.
- Our kids together each have 529s for about $40K. I would like to pay for their undergraduate, but I do understand retirement first.

We are both still in shock. Here is our plan right now:
- Not to tell kids until he is symptomatic, since we ourselves are still figuring out what this means
- Not make major decisions yet while we process this
- Hubbie has finally agreed now is the time to get a will and other life documents (yes I have mine)
- We are both FT employed and happy in our jobs, though both would happily quit if we won the lottery
- Stay on FIRE plan we were on, pay off car, pay off debt to relative for secondary house in other country
- Write family bucket list and start working on it (Disney trip for kids, some travel, happy day-to-day living)
- Simplify whatever we can (no new pets, keep focus on homelife versus work ladder -- more my problem than his)
- Treasure every moment, which we should have been doing always, but this has certainly been a wake-up call
- I know I should sign him up for Medicare at age 65

Questions:
- Any recommended reading material? I am calling my employer's EAP counseling program for my own mental health
- Hubbie has enough in 401k/IRA so far to pay for 2-3 years of nursing home care, but no more. Right now he is still contributing max $18500+catch-up amount. Under our previous "5-year plan" he would have gained roughly another $100K for retirement this way. I am wondering if we should stop saving for his retirement, use that $ for paying our remaining debts and working the bucket list. Also wondering if we give up on his FRA and he early retires at 62. Besides exercise and diet, stress is one other factor that could help improve his chances. Hubby hasn't brought this up bc it wouldn't even occur to him (he even said he should work more and I've already insisted that he not). I think that if he retires early, then we would give up a chance of his getting SS disability, which is higher, but you have to wait until you are seriously ill, of course. He would be a great House Husband and SAH Dad -- he is already Mr. Wonderful on the home front.
- According to our original 5-year FIRE plan, we were generally planning that hubby could retire at FRA and maaaaybe I could retire, but I would have deferred taking SS until 70. We also think that once hubbie takes SS the kids may be eligible for some SS benefits, but not counting on that.

I want to rent our house, pack backbacks, and travel around the world...but, realistically, I think I have to keep working to keep our health insurance and he needs to keep getting monitored every 3 months for the next year. I'm really wondering (and I know I need to talk to him about this) if we will regret him keeping on working up until he gets ill...it just seems like such a waste.

I know he (or I) could be hit by a car tomorrow and I was worrying for nothing, and boy oh boy I used to lament not knowing how we would die...some irony that now that we have a little clarity about my husband's prospects, I'm in shock and upset. I'm hoping I get to a state of acceptance where I can appreciate that we got this opportunity of foresight to prepare, but I confess I am not quite there yet. In fact, I cannot believe that I might lose my life partner so much earlier than I'd dreamed...yes, still in shock.

Any advice appreciated. Nuvoletta

Vernn
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Vernn » Wed Oct 31, 2018 9:11 pm

I'm truly sorry to hear of this diagnosis. I know what a shock a new diagnosis can be and MD Anderson is a great place to get second opinion. Just pace yourself it will be a long journey. One thing I would suggest is seeing if his diagnosis in on the Compassionate Allowances list with social security. This can be of great help if the disease progresses to a point where he can no longer work. Rare diseases provide more challenges than common disorders and social security has updated this list in recent years.


https://www.ssa.gov/compassionateallowances/

delamer
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by delamer » Wed Oct 31, 2018 9:19 pm

I am very sorry about your husband’s diagnosis.

While you are certainly entitled to express your opinion regarding him continuing to work, you should respect his choice in that regard. Work might be a welcome distraction for him. Two kids in school most of the day and a working spouse leaves a lot of time to fill, psychologically.

I’d suggest you figure out a way to tell your children the basics of their father’s situation now. It will be too big a secret to keep, and they will figure out that something is wrong.

The only specific financial suggestion that I have is that you try to find out the likelihood of running up significant medical bills in terms of treatment or palliative care. And also how your current insurance integrates with Medicare. That may effect how much you continue to save versus use for your bucket list.

ResearchMed
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by ResearchMed » Wed Oct 31, 2018 9:21 pm

Nuvoletta wrote:
Wed Oct 31, 2018 8:51 pm
My husband just received a diagnosis of a "rare" type of non-curable bone cancer (non-Hodgkins lymphoma "WM"). While the 5-year outlook is promising for patients like my husband who are otherwise in good health and under age 65, after that it gets highly variable and the 10-year outlook starts getting grim. We are on a steep learning curve. We feel generally confident in the diagnosis and we will follow the recommended treatment approach based on our research (wait to do chemo until symptomatic bc won't cure, just delay, the final outcome). We are seeking a second opinion at MD Anderson. DH is 61, I am 49, our 2 kids are pre-teens.

Background:
- We are not FIRE because we started saving late, but we have good FIRE habits over recent decade and up until a month ago, we were discussing a 5-year plan to be FIRE or at least "enough" to consider retiring (him by FRA at 67 and me maybe at same time, but not taking SS until 70).
- House paid off, we own a rental that pays for itself and generates income after expenses, one car paid, another with 5 thousand at 2%.
- We have a liquid 6-month emergency fund.
- We owe a family member a remaining $31K to buy them out of a family house in another country. We were going to cash flow that amount through 2019 and still can or I can do a 401k loan at 6% if I have to. Not worried about this debt and that house is where I would take him and kids if he went downhill suddenly bc his family would help us (we have no family in US). Family house was one retirement scenario, we visit almost every year.
- Both of us have good health insurance through my job, I have FMLA benefit if needed and both of us have long-term disability insurance.
- Life insurance-wise, I am comfortable with our coverage based on our ages, and so glad we have it.
- Our kids together each have 529s for about $40K. I would like to pay for their undergraduate, but I do understand retirement first.

We are both still in shock. Here is our plan right now:
- Not to tell kids until he is symptomatic, since we ourselves are still figuring out what this means
- Not make major decisions yet while we process this
- Hubbie has finally agreed now is the time to get a will and other life documents (yes I have mine)
- We are both FT employed and happy in our jobs, though both would happily quit if we won the lottery
- Stay on FIRE plan we were on, pay off car, pay off debt to relative for secondary house in other country
- Write family bucket list and start working on it (Disney trip for kids, some travel, happy day-to-day living)
- Simplify whatever we can (no new pets, keep focus on homelife versus work ladder -- more my problem than his)
- Treasure every moment, which we should have been doing always, but this has certainly been a wake-up call
- I know I should sign him up for Medicare at age 65

Questions:
- Any recommended reading material? I am calling my employer's EAP counseling program for my own mental health
- Hubbie has enough in 401k/IRA so far to pay for 2-3 years of nursing home care, but no more. Right now he is still contributing max $18500+catch-up amount. Under our previous "5-year plan" he would have gained roughly another $100K for retirement this way. I am wondering if we should stop saving for his retirement, use that $ for paying our remaining debts and working the bucket list. Also wondering if we give up on his FRA and he early retires at 62. Besides exercise and diet, stress is one other factor that could help improve his chances. Hubby hasn't brought this up bc it wouldn't even occur to him (he even said he should work more and I've already insisted that he not). I think that if he retires early, then we would give up a chance of his getting SS disability, which is higher, but you have to wait until you are seriously ill, of course. He would be a great House Husband and SAH Dad -- he is already Mr. Wonderful on the home front.
- According to our original 5-year FIRE plan, we were generally planning that hubby could retire at FRA and maaaaybe I could retire, but I would have deferred taking SS until 70. We also think that once hubbie takes SS the kids may be eligible for some SS benefits, but not counting on that.

I want to rent our house, pack backbacks, and travel around the world...but, realistically, I think I have to keep working to keep our health insurance and he needs to keep getting monitored every 3 months for the next year. I'm really wondering (and I know I need to talk to him about this) if we will regret him keeping on working up until he gets ill...it just seems like such a waste.

I know he (or I) could be hit by a car tomorrow and I was worrying for nothing, and boy oh boy I used to lament not knowing how we would die...some irony that now that we have a little clarity about my husband's prospects, I'm in shock and upset. I'm hoping I get to a state of acceptance where I can appreciate that we got this opportunity of foresight to prepare, but I confess I am not quite there yet. In fact, I cannot believe that I might lose my life partner so much earlier than I'd dreamed...yes, still in shock.

Any advice appreciated. Nuvoletta
SO sorry to hear about this.
It's something just like this that is my deepest fear (or among the top very few).

We are a bit older, but we've each had some health-life scares, meaning more than just health... seriously life-threatening episodes. Those were acute (e.g., will <whichever it was> make it to the hospital or be revived, sort of things). Twice, there were several days of, will <one> make it or not...?

Belatedly, we decided that all of those "wish list" activities, mostly travel, needed to START HAPPENING, and not always be... "someday".
So I was VERY pleased to see you make clear working on that family bucket list.
One problem we encountered is that for a few more exotic travel locations, we aren't sure we feel comfortable being that far away from the hospital/specialists who know us. So consider doing some of those things such that any that might be more or less restricted when he is less well... get those to the top of the list if they are among the most important/desired.

About Medicare at age 65... won't he continue to have his (or your) Employer coverage?
There's no penalty for the "late enrollment" IF the reason is that there is creditable coverage from a employer's plan. Or would Medicare supplement costs that his (or yours if he stops working) current plan doesn't cover well?
Some employers require signing up for Medicare A (no cost for A) at 65, but not B.

About telling the children. I understand about not telling them until he is symptomatic.
OTOH, children can be VERY perceptive about "something is wrong", so if they sense that, but don't know what is causing the underlying stress/etc., perhaps it would be better for them to know, at least in steps. After all, there IS variability in progression. But with the internet, they'll probably be learning fast once they know.
Counseling for them, or for all of you, might be helpful (?).

You might also want to meet with someone like an elder care attorney. You might be facing some decisions about how to cover his costs, while not leaving you with nothing for your future needs.
There can be lookback period deadlines (thinking here of the 5 yr Medicaid lookback), so when you catch your breath, you might want to get a quick overview of your current and future situations.

Again, so sorry to hear this.

RM
This signature is a placebo. You are in the control group.

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calmaniac
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by calmaniac » Wed Oct 31, 2018 9:25 pm

Wow, sorry to hear this news. I am buoyed by your very thoughtful assessment of the situation. Most people could not organize such an analysis on a good day, let alone if their life partner was recently diagnosed with a potentially life-altering disease!

1. Agree with second opinion at major center
2. Agree with "Not make major decisions yet while we process this"
3. I would not make any Social Security decisions without getting expert advice. Depending on your SS benefit relative to your husband's, it may be of value to you for him to prolong his taking SS until he is 70. I don't believe kids get any SS unless he passes and only while they are <18 years.
4. The kids. Agree for now, but at some point some amount of disclosure will be needed.

Best wishes and stay strong!

kaneohe
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by kaneohe » Wed Oct 31, 2018 10:30 pm

Very sorry to hear about your DH's diagnosis. One thing to explore when Medicare kicks in.........not sure what your insurance will not cover.........a good Medicare supplement will pick up nearly all of the expenses that Medicare does not. Since treatment can be expensive, the 20% that Medicare doesn't cover can be expensive too.

The flip side to the incurable nature is that this lymphoma seems to be slow-growing. That gives you time to do things, plan for the future, time for medicine to devise new treatments. Often the outlook/statistics for diseases
are based on older treatments so hopefully current treatments may yield better results. Best wishes for you and your family.

letsgobobby
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by letsgobobby » Wed Oct 31, 2018 10:40 pm

Time is more valuable than money; make decisions accordingly.

mouses
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by mouses » Wed Oct 31, 2018 10:41 pm

I am sorry to hear this.

You have done a remarkable job of planning already. I think very few people could have done this.

My thought is that you are right to not tell the kids until your husband becomes symptomatic. Let them have an untroubled childhood as long as possible.

Perhaps in ten years significant strides will be made in treating this disease. I hope so.

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dodecahedron
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by dodecahedron » Wed Oct 31, 2018 11:05 pm

calmaniac wrote:
Wed Oct 31, 2018 9:25 pm
I don't believe kids get any SS unless he passes and only while they are <18 years.
Not correct. Kids are eligible for SS dependent benefits if parent collects SS based on age (62+) or disability. No need for a parent to die in order for kids to qualify for SS benefits.

SS dependent child benefits end when child turns 18 (or 19 if still in high school) unless the child is disabled, in which case they may continue for the child´s lifetime.

Good reading on this subject:

https://www.kitces.com/blog/why-social- ... not-delay/

moi
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by moi » Thu Nov 01, 2018 2:43 am

So sorry to hear about your diagnosis.

You may want to take a close look at the fine prints of your outpatient pharmacy benefit, especially your copay or share of cost in the "specialty-tier" drug. That's code for "so expensive you wouldn't believe it." You may end up needing some kind of expensive pills that you need to take daily, for lets say months or years, and the retail cost for 30 day supply is $12000. Some drug benefit plans ask for 10% or 20% share of cost with no annual cap, so let's say 10% x$12000 x 12 months = $$$$$. More generous plans may be $20 to $250 copay per month.

Best,
moi
Best, | moi

dekecarver
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by dekecarver » Thu Nov 01, 2018 5:04 am

Speaking from experience as a teen through my mid twenties with a much younger parent. Take a deep breath, step back, get things in perspective, be honest with your kids to the level that they will understand (they know and can understand more than you think perhaps), maintain as much normalcy as possible, and most importantly I think; be aware of the stages of grieving and work through them together as each family member will move in and out of stages on their own time.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by BarbBrooklyn » Thu Nov 01, 2018 5:22 am

Read Atul Gawande "On Being Mortal".

I would consult with a child mental health specialist at some point about when/How to tell your kids about their dad's dx.

Growing up, there were multiple relatives dying of cancer in my life. Everything was a secret from someone and the tension that swirled around me was unbearable. Whatever I imagined was much worse than it actually was.

I would be in favor of a matter of fact discussion of the facts that are appropriate to the ages of your kids. But I'd get some expert advise on this.
BarbBrooklyn | "The enemy of a good plan is the dream of a perfect plan."

prairieman
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by prairieman » Thu Nov 01, 2018 8:43 am

My advice, as a fellow WM patient, is to live your life the same as if you did not have it. For me, this disease has been little more than a nuisance - constant monitoring with occasional treatment here and there. The worst part of the disease so far was the fear it caused in the first year after diagnosis. The fear eventually fades and this just becomes one of those individualized things each of us has to deal with.

darkhorse
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by darkhorse » Thu Nov 01, 2018 9:17 am

I am very sorry about the diagnosis

There is no best way but here's how I would approach it

1. Obtain second opinion about diagnosis, treatment plan, possible clinical trials and most importantly prognosis at bigger center such as MD Anderson

2. Reflect on prioritizing from happiness perspective. if you (your husband) truly knew exact time you have in hand, how would you like to spend that time. Is it work, leaving money for kids or getting rid if debt, spending time at home , travel.. whatever it is do that. With dual income family with good life insurance etc, rest of the things will fall into place. I wouldn't spend substantial time doing anything at this point that would not generate positive experience.

3. This may be harder part but nonetheless need to decide within 3 to 6 months. Decide about end of life care options. I pray that he may not need to exercise that for decades to come but any of us can be in a situation having to make decisions regarding ventilator CPR etc. Unless one helps family understand one's wishes, it puts family in great deal of stress to make decisions on their own.

Good luck

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jharkin
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by jharkin » Thu Nov 01, 2018 9:29 am

Having 4 immediate family members diagnosed with cancer in the last year (including a couple of multiple recurrences and one initial diagnosis of lymphoma at a young age - 38) I sympathize with difficult situation you are going though.

Definitely don't make any rush decisions and you are doing the right thing getting a second opinion (and if needed even a third. If its hard to find local expertise for a rare case I wouldn't rule out even traveling to go someplace like Mayo if possible).

Only other thoughts... trying to be careful not to break the medical advice rule... We found that none of the doctors would ever tell us anything cancer related is totally 100% guaranteed curable. They also suggested to us that we don't obsess too much on the 5 and 10 year survival rates as those statistics are always backward looking at patients diagnosed 5-10-or more years ago based on the best therapies that where available then. And things constantly improve so the outlook for new diagnosed patients *might be* better than those stats. Example: My mom has a very rare stomach cancer that 20 years ago had no treatment other than surgery. When she got diagnosed there was a pill form targeted therapy that put her in full remission. Well, 5 years later it recurred this summer but now there are 3 different approved targeted therapies and two more in clinical trial.

Point is outcomes get better every year, so stay positive and fight the good fight.

kaneohe
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by kaneohe » Thu Nov 01, 2018 10:05 am

prairieman wrote:
Thu Nov 01, 2018 8:43 am
My advice, as a fellow WM patient, is to live your life the same as if you did not have it. For me, this disease has been little more than a nuisance - constant monitoring with occasional treatment here and there. The worst part of the disease so far was the fear it caused in the first year after diagnosis. The fear eventually fades and this just becomes one of those individualized things each of us has to deal with.
Good advice here.........the pairing of the words "incurable cancer" in some cases is unfortunate and misleading.
In some cases they are incurable because they are slow growing and it is more difficult to selectively attack them than fast growing ones. Often ,though incurable , the slow growing ones can be treated, like a chronic disease like arthritis or diabetes, yet somehow the mental picture we have seems to differ greatly between cancer and the other diseases. We often forget that we are all inflicted with an incurable disease.......human mortality. The time scale here tends to be somewhat longer but uncertain in any case.

The good thing about a slowly progressing chronic condition is that there is time for medical science to make advances.

Interesting thought question: would you rather have
1) a fast growing cancer which has a high rate of cure (e.g. 90%) but a 10% chance of being unsuccessful and you being gone within a year or
2) a slow growing incurable but treatable cancer with reasonably high expectancy of living 5 yrs and perhaps more.

Hikes_With_Dogs
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Hikes_With_Dogs » Thu Nov 01, 2018 10:18 am

delamer wrote:
Wed Oct 31, 2018 9:19 pm


I’d suggest you figure out a way to tell your children the basics of their father’s situation now. It will be too big a secret to keep, and they will figure out that something is wrong.

+1. Find a care giver's support group both for you and for your children (they have special focused ones for kids). They need to know now, so they can process. The support groups can help you find ways to address this with your kids that are age appropriate.

curmudgeon
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by curmudgeon » Thu Nov 01, 2018 12:27 pm

It's hard news to hear, and potentially difficult times ahead, but my first recommendation is to avoid obsessing over this and try to stay steady while you wrap your minds around this. I wouldn't try to hide the fact that there is bad news from the kids, but I would keep it low-key and a bit vague.

I went through this with my own father when I was a teenager, and recently with a coworker, though with a different disease (with a more definite prognosis and typical 2-year lifespan after diagnosis).

My first thought is to live your lives with purpose. While the "bucket list", or "make a wish" type scenarios can catch the public imagination, having a sense of purpose and value in your life will carry you much further. I wouldn't rush to quit working and see the world unless those were things that had been the driving focus of your life before this news. A job often provides a sense of identity and focus. Continuing to work while you can, to feel valuable, to be making provision for your loved ones, can be far more rewarding than sightseeing. At the same time, having a sense of balance is also important; working 80-hour weeks to make that next step up the corporate ladder loses meaning and time with friends and family becomes more precious.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by MJW » Thu Nov 01, 2018 12:38 pm

BarbBrooklyn wrote:
Thu Nov 01, 2018 5:22 am

I would consult with a child mental health specialist at some point about when/How to tell your kids about their dad's dx.
Nuvoletta - I agree with the suggestion above. There's probably no need to say anything in the near term as you and your husband work to come to grips with this new reality, but I would imagine that it will be awful for both of you to see and interact with your kids each day with this hanging over your heads. Some professional feedback can be helpful in sorting out the how and when.

My best to you and your husband.

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8foot7
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by 8foot7 » Thu Nov 01, 2018 12:44 pm

I didn't see anyone else mention this, but I think I would take a hard look at whether putting $24k/year in his 401k is the right call. You may well need that money for medical bills, and it could come in handy for bucket list items, and if the outlook is truly grim at 10 years then the tax deferral is not super compelling. I think I'd want to be as liquid as I could be.

Good luck, and so sorry.

prairieman
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by prairieman » Thu Nov 01, 2018 3:48 pm

I posted earlier, as somebody with the same cancer as your husband (WM). I thought I’d add to my earlier post a couple of things:
(1) I received treatment ten years ago and did not need treatment again, until recently. In between were some of the best years of my life, and I am still very excited about the future.
(2) Most people with the disease eventually die with it rather than from it. New highly effective drugs exist already and new ones are being tested that should be ready to go in a year. BCL-2 inhibitors such as Venetoclax have potential of being essentially curative.
(3) We were and continue to remain up front with our kids and family, making sure they understand it is usually more of a chronic condition than it is a cancer. There were tears, but I think all appreciated the honesty and so it was worth it.

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dm200
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by dm200 » Thu Nov 01, 2018 3:51 pm

If he is still working, then get borrower pay credit life and disability insurance on credit union car and personal loans - and keep doing it as long as eligible.

JuniorBH
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by JuniorBH » Thu Nov 01, 2018 4:47 pm

I'm so sorry to hear this.

As others have mentioned, I would absolutely seek a second opinion at the most "qualified" center you realistically get to.

Every diagnosis is different; that said, my MIL dealt with stage IV colon cancer two years ago and the opinions we received were astonishing different. Without going into details, getting a second opinion at Sloan Kettering in NYC made a huge difference and she is currently in remission after having several tumors removed.

The only other thought I have is to agree with the point you made about not making any immediate major changes and wait to see how it initially begins to play out.

Again, very sorry.

spencer99
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by spencer99 » Thu Nov 01, 2018 8:34 pm

prairieman wrote:
Thu Nov 01, 2018 8:43 am
My advice, as a fellow WM patient, is to live your life the same as if you did not have it. For me, this disease has been little more than a nuisance - constant monitoring with occasional treatment here and there. The worst part of the disease so far was the fear it caused in the first year after diagnosis. The fear eventually fades and this just becomes one of those individualized things each of us has to deal with.
+1

As another (very recently diagnosed) WM patient I echo Prairieman's thoughtful advice.

To move this away from potentially off-topic medical advice and to financial thoughts... I believe available therapies offer a close-to average lifespan/life quality. At this point I am not changing any financial plans including delay of SS until age 70. I'll continue to assess those choices as health condition warrants.

K

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lthenderson
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by lthenderson » Fri Nov 02, 2018 9:08 am

Nuvoletta wrote:
Wed Oct 31, 2018 8:51 pm
Any advice appreciated. Nuvoletta
I'm on the other side of the coin dealing with my mom in the final stages of her two and a half year battle with brain cancer. Like others, don't rush decisions. Concentrate on the making of memories. We told our kids about grandma when they started asking questions. Until then we let them be kids. The last two and a half years have been some of the best years in our family.

Reading the book "On Being Mortal" by Atul Gawande brought me a lot of peace in this situation and now that the end is very near, I feel I'm prepared.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by celia » Sat Nov 03, 2018 1:56 am

Nuvoletta wrote:
Wed Oct 31, 2018 8:51 pm
- House paid off, we own a rental that pays for itself and generates income after expenses, one car paid, another with 5 thousand at 2%.
- We owe a family member a remaining $31K to buy them out of a family house in another country. We were going to cash flow that amount through 2019 and still can or I can do a 401k loan at 6% if I have to. Not worried about this debt and that house is where I would take him and kids if he went downhill suddenly bc his family would help us (we have no family in US). Family house was one retirement scenario, we visit almost every year.
If I understand this correctly, you own/paying off loans on 3 properties:
* The house you live in is paid off
* You have a rental that pays for itself
* You own property in another country for which you are making payments to a relative

You might want to simplify your life a bit by getting rid of one of the properties unless each property can pay for itself and "take care" of its own upkeep. You won't be able to be everywhere in a few years, and you will have more important things to do.

The relatives you can depend may save you from paying for expensive nursing care.
Questions:
- Any recommended reading material? I am calling my employer's EAP counseling program for my own mental health
Besides learning about the illness itself, you could see if there is an online support group. Having someone "to talk to" as needed, who is in a similar situation, can be helpful.

Regarding EAP, if your husband is also eligible for this service, he might want to take advantage of it, either with you or separately.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by brajalle » Sat Nov 03, 2018 3:00 am

There's plenty of good advice in this thread. I did want to re-suggest what a few others have discussed somewhat, which is to consider re-allocating some asset ownership to potentially shield them. There are some look back periods as another poster hinted at, so you'd want to do your homework and potentially consult a lawyer for anything specific or involving trusts or such. Hopefully, as spencer99 and prairieman have indicated, this is more of a chronic condition than anything else (modern medicine is wonderful), but it may not hurt to take steps just in case.

Past that, I think you may find that various life events, such as this one, have a tendency to help us refocus on what is most important to us in life. Despite my wife's illness, these last few years have been the most enjoyable and fulfilling years yet for either of us. Hopefully that too will be the silver lining in what hopefully becomes nothing more than your husband's chronic condition.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by LadyGeek » Sat Nov 03, 2018 8:43 am

I removed an off-topic post suggesting medical advice (clinical trial therapy). Although members are trying to help, we need to stay focused on the financial aspects.
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by newstreetnj » Sat Nov 03, 2018 6:58 pm

So sorry to hear about your spouse.

To focus on Social Security, my experience has been that children DO receive benefits if their dad is receiving benefits. This I know for a fact because my minor children did receive benefits until graduation from high school. I began taking benefits at age 66 for that reason.

Bob

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by LadyGeek » Sat Nov 03, 2018 7:09 pm

^^^ Here's the Social Security guidance: Benefits Planner: Retirement | Benefits For Your Family (Benefits for Children)
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by dm200 » Sun Nov 04, 2018 12:40 pm

It might be good, as well, to fully understand BOTH the employer's policies and practices regarding all possible aspects of the situation as well as the applicable laws, rules and regulations.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 3:58 pm

Vernn wrote:
Wed Oct 31, 2018 9:11 pm
I'm truly sorry to hear of this diagnosis. I know what a shock a new diagnosis can be and MD Anderson is a great place to get second opinion. Just pace yourself it will be a long journey. One thing I would suggest is seeing if his diagnosis in on the Compassionate Allowances list with social security. This can be of great help if the disease progresses to a point where he can no longer work. Rare diseases provide more challenges than common disorders and social security has updated this list in recent years.


https://www.ssa.gov/compassionateallowances/
OP here -- LOL because I just read your line "Just pace yourself it will be a long journey." THANK YOU bc that's what I did this week...I was so relieved to post but then after posting and I started getting replies, including some lovely PMs, I just had to turn off the computer and hunker down and be mom, wife, and worker this week, finishing the Halloween costumes, Halloween itself, my own doctor's appointment, getting our fridge fixed and restocked, dealing with a kid's unexpected chipped tooth and a hair-raising ride to the dentist...it has been quite a week even without my husband's diagnosis and I just had to compartmentalize. Then LOL on your email...bc now I have Sunday afternoon to open up the computer and read and process a bit.

Thank you for the link on compassionate allowances...I wasn't even aware of that program, so I will check now AND back-pocket it for later just in case.

Thank you so much for taking the time to post -- I truly appreciate this community.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 4:32 pm

ResearchMed wrote:
Wed Oct 31, 2018 9:21 pm
Nuvoletta wrote:
Wed Oct 31, 2018 8:51 pm
My husband just received a diagnosis of a "rare" type of non-curable bone cancer (non-Hodgkins lymphoma "WM"). While the 5-year outlook is promising for patients like my husband who are otherwise in good health and under age 65, after that it gets highly variable and the 10-year outlook starts getting grim. We are on a steep learning curve. We feel generally confident in the diagnosis and we will follow the recommended treatment approach based on our research (wait to do chemo until symptomatic bc won't cure, just delay, the final outcome). We are seeking a second opinion at MD Anderson. DH is 61, I am 49, our 2 kids are pre-teens.

Background:
- We are not FIRE because we started saving late, but we have good FIRE habits over recent decade and up until a month ago, we were discussing a 5-year plan to be FIRE or at least "enough" to consider retiring (him by FRA at 67 and me maybe at same time, but not taking SS until 70).
- House paid off, we own a rental that pays for itself and generates income after expenses, one car paid, another with 5 thousand at 2%.
- We have a liquid 6-month emergency fund.
- We owe a family member a remaining $31K to buy them out of a family house in another country. We were going to cash flow that amount through 2019 and still can or I can do a 401k loan at 6% if I have to. Not worried about this debt and that house is where I would take him and kids if he went downhill suddenly bc his family would help us (we have no family in US). Family house was one retirement scenario, we visit almost every year.
- Both of us have good health insurance through my job, I have FMLA benefit if needed and both of us have long-term disability insurance.
- Life insurance-wise, I am comfortable with our coverage based on our ages, and so glad we have it.
- Our kids together each have 529s for about $40K. I would like to pay for their undergraduate, but I do understand retirement first.

We are both still in shock. Here is our plan right now:
- Not to tell kids until he is symptomatic, since we ourselves are still figuring out what this means
- Not make major decisions yet while we process this
- Hubbie has finally agreed now is the time to get a will and other life documents (yes I have mine)
- We are both FT employed and happy in our jobs, though both would happily quit if we won the lottery
- Stay on FIRE plan we were on, pay off car, pay off debt to relative for secondary house in other country
- Write family bucket list and start working on it (Disney trip for kids, some travel, happy day-to-day living)
- Simplify whatever we can (no new pets, keep focus on homelife versus work ladder -- more my problem than his)
- Treasure every moment, which we should have been doing always, but this has certainly been a wake-up call
- I know I should sign him up for Medicare at age 65

Questions:
- Any recommended reading material? I am calling my employer's EAP counseling program for my own mental health
- Hubbie has enough in 401k/IRA so far to pay for 2-3 years of nursing home care, but no more. Right now he is still contributing max $18500+catch-up amount. Under our previous "5-year plan" he would have gained roughly another $100K for retirement this way. I am wondering if we should stop saving for his retirement, use that $ for paying our remaining debts and working the bucket list. Also wondering if we give up on his FRA and he early retires at 62. Besides exercise and diet, stress is one other factor that could help improve his chances. Hubby hasn't brought this up bc it wouldn't even occur to him (he even said he should work more and I've already insisted that he not). I think that if he retires early, then we would give up a chance of his getting SS disability, which is higher, but you have to wait until you are seriously ill, of course. He would be a great House Husband and SAH Dad -- he is already Mr. Wonderful on the home front.
- According to our original 5-year FIRE plan, we were generally planning that hubby could retire at FRA and maaaaybe I could retire, but I would have deferred taking SS until 70. We also think that once hubbie takes SS the kids may be eligible for some SS benefits, but not counting on that.

I want to rent our house, pack backbacks, and travel around the world...but, realistically, I think I have to keep working to keep our health insurance and he needs to keep getting monitored every 3 months for the next year. I'm really wondering (and I know I need to talk to him about this) if we will regret him keeping on working up until he gets ill...it just seems like such a waste.

I know he (or I) could be hit by a car tomorrow and I was worrying for nothing, and boy oh boy I used to lament not knowing how we would die...some irony that now that we have a little clarity about my husband's prospects, I'm in shock and upset. I'm hoping I get to a state of acceptance where I can appreciate that we got this opportunity of foresight to prepare, but I confess I am not quite there yet. In fact, I cannot believe that I might lose my life partner so much earlier than I'd dreamed...yes, still in shock.

Any advice appreciated. Nuvoletta
SO sorry to hear about this.
It's something just like this that is my deepest fear (or among the top very few).

We are a bit older, but we've each had some health-life scares, meaning more than just health... seriously life-threatening episodes. Those were acute (e.g., will <whichever it was> make it to the hospital or be revived, sort of things). Twice, there were several days of, will <one> make it or not...?

Belatedly, we decided that all of those "wish list" activities, mostly travel, needed to START HAPPENING, and not always be... "someday".
So I was VERY pleased to see you make clear working on that family bucket list.
One problem we encountered is that for a few more exotic travel locations, we aren't sure we feel comfortable being that far away from the hospital/specialists who know us. So consider doing some of those things such that any that might be more or less restricted when he is less well... get those to the top of the list if they are among the most important/desired.

About Medicare at age 65... won't he continue to have his (or your) Employer coverage?
There's no penalty for the "late enrollment" IF the reason is that there is creditable coverage from a employer's plan. Or would Medicare supplement costs that his (or yours if he stops working) current plan doesn't cover well?
Some employers require signing up for Medicare A (no cost for A) at 65, but not B.

About telling the children. I understand about not telling them until he is symptomatic.
OTOH, children can be VERY perceptive about "something is wrong", so if they sense that, but don't know what is causing the underlying stress/etc., perhaps it would be better for them to know, at least in steps. After all, there IS variability in progression. But with the internet, they'll probably be learning fast once they know.
Counseling for them, or for all of you, might be helpful (?).

You might also want to meet with someone like an elder care attorney. You might be facing some decisions about how to cover his costs, while not leaving you with nothing for your future needs.
There can be lookback period deadlines (thinking here of the 5 yr Medicaid lookback), so when you catch your breath, you might want to get a quick overview of your current and future situations.

Again, so sorry to hear this.

RM
Good point re: exotic travel locations. I'll mention that to hubbie...especially one destination he's mentioned seems strenuous so definitely a consideration.

About Medicare at age 65, I confess since we weren't there, yet, I hadn't investigated, I had just read an article recently that highlighted a man who was negatively impacted by not having signed up when he was 65. Sounds like I need to include this on my list to investigate, including what my particular employer's insurance requires. Thanks for info.

About telling the children, I appreciate the opinion. I put it out there being open to hearing responses like yours. I'm not ready myself, but I can foresee a time when I will be ready to tell the kids, especially to share with his eldest adult daughter (in her late 20s). She is a wonderful friend to me and very mature and thoughtful. She is also astute as you describe. This will likely be something that I'll have to ask my husband to go to counseling with me eventually to work out. Unfortunately, in all the ways my husband is wonderful, he is very protective of his kids and I see this one sticking point becoming a painful issue in the future. It is hard to explain, but as long as he feels he can protect them from unhappiness, I think he will want to defer telling them and, because it is his health issue, I do not feel like I should override his wishes. Yes, I'll need to go to counseling myself to figure out this conundrum.

And yeah, the elder care attorney and planning for covering his costs and my own future and the kids', I know you are right. Previously, when I was looking for someone to help with my will, I tried to find such a person and ended up just going with a family friend's lawyer. I'm not thrilled with my own will, but it was an improvement on what I had. I need to make finding an elder care attorney a priority while we have the time to think about these decisions and not wait until hubbie is ill and we are even more extended. Thanks for the prompt.

Thank you again for taking the time to reply.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 4:46 pm

calmaniac wrote:
Wed Oct 31, 2018 9:25 pm
Wow, sorry to hear this news. I am buoyed by your very thoughtful assessment of the situation. Most people could not organize such an analysis on a good day, let alone if their life partner was recently diagnosed with a potentially life-altering disease!

1. Agree with second opinion at major center
2. Agree with "Not make major decisions yet while we process this"
3. I would not make any Social Security decisions without getting expert advice. Depending on your SS benefit relative to your husband's, it may be of value to you for him to prolong his taking SS until he is 70. I don't believe kids get any SS unless he passes and only while they are <18 years.
4. The kids. Agree for now, but at some point some amount of disclosure will be needed.

Best wishes and stay strong!
THANK YOU!!!! I sure appreciate the kind words. Interesting about #3...um, who do you think is expert advice? If I can't find an expert, I'll suck it up and try to read all I can on this forum :) bc I know I've read about this topic previously but yeah, I told myself I'd look into when we were closer to needing to decide. I think I recall there being a book recommended here on SS. my husband and I make roughly the same amount, though he has some high years more recently bc he is hourly.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 4:49 pm

mouses wrote:
Wed Oct 31, 2018 10:41 pm
I am sorry to hear this.

You have done a remarkable job of planning already. I think very few people could have done this.

My thought is that you are right to not tell the kids until your husband becomes symptomatic. Let them have an untroubled childhood as long as possible.

Perhaps in ten years significant strides will be made in treating this disease. I hope so.
Thank you!!!! Yes, I am positive that my husband is thinking of the kids' happiness. Just these last couple of weeks we've been adjusting a bit ourselves to be "in the moment" and I think that is some lemonade we can make of this lemon.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 4:52 pm

dodecahedron wrote:
Wed Oct 31, 2018 11:05 pm
calmaniac wrote:
Wed Oct 31, 2018 9:25 pm
I don't believe kids get any SS unless he passes and only while they are <18 years.
Not correct. Kids are eligible for SS dependent benefits if parent collects SS based on age (62+) or disability. No need for a parent to die in order for kids to qualify for SS benefits.

SS dependent child benefits end when child turns 18 (or 19 if still in high school) unless the child is disabled, in which case they may continue for the child´s lifetime.

Good reading on this subject:

https://www.kitces.com/blog/why-social- ... not-delay/
OP here -- thanks!!!! I'll definitely check out this link. Keep 'em coming, y'all!!!! :)

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 4:54 pm

moi wrote:
Thu Nov 01, 2018 2:43 am
So sorry to hear about your diagnosis.

You may want to take a close look at the fine prints of your outpatient pharmacy benefit, especially your copay or share of cost in the "specialty-tier" drug. That's code for "so expensive you wouldn't believe it." You may end up needing some kind of expensive pills that you need to take daily, for lets say months or years, and the retail cost for 30 day supply is $12000. Some drug benefit plans ask for 10% or 20% share of cost with no annual cap, so let's say 10% x$12000 x 12 months = $$$$$. More generous plans may be $20 to $250 copay per month.

Best,
moi
Ooomph! Wow...thanks...adding this to my list of things to check and then re-check next year when I re-up our health plan, in case I can adjust any of our selections. Generally, I pay for the best grade plan I can get through my employer, but I can check the fine print just as you say, to be mentally prepared. Yikes.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 5:02 pm

dekecarver wrote:
Thu Nov 01, 2018 5:04 am
Speaking from experience as a teen through my mid twenties with a much younger parent. Take a deep breath, step back, get things in perspective, be honest with your kids to the level that they will understand (they know and can understand more than you think perhaps), maintain as much normalcy as possible, and most importantly I think; be aware of the stages of grieving and work through them together as each family member will move in and out of stages on their own time.
Thank you for writing...I need to read up on those stages and its a good point that we will be on different paths. My husband and I are opposite ends of the spectrum re: life planning and worrying, so he freaks me out when he starts talking the same language as me, haha.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 5:07 pm

BarbBrooklyn wrote:
Thu Nov 01, 2018 5:22 am
Read Atul Gawande "On Being Mortal".

I would consult with a child mental health specialist at some point about when/How to tell your kids about their dad's dx.

Growing up, there were multiple relatives dying of cancer in my life. Everything was a secret from someone and the tension that swirled around me was unbearable. Whatever I imagined was much worse than it actually was.

I would be in favor of a matter of fact discussion of the facts that are appropriate to the ages of your kids. But I'd get some expert advise on this.
Thank you for the reading recommendation! I'll add it to the list.

I appreciate your recc based on personal experience as a child. I didn't have that experience, so it is helpful. The advice of getting professional help on telling the kids sounds like something my husband would be receptive to...because he loves them so much, if a professional explains it is in their interest, he may be more receptive to it.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 5:11 pm

prairieman wrote:
Thu Nov 01, 2018 8:43 am
My advice, as a fellow WM patient, is to live your life the same as if you did not have it. For me, this disease has been little more than a nuisance - constant monitoring with occasional treatment here and there. The worst part of the disease so far was the fear it caused in the first year after diagnosis. The fear eventually fades and this just becomes one of those individualized things each of us has to deal with.
Hi, prairieman! You are our first WM contact!!! Thank you! I appreciate your post bc yes, we are in that fear stage. I look forward to moving on to that "nuisance" stage of chronic care I'm hearing echoes of regarding many types of cancer. Thank you again!!!!! Also grateful there is a WM website...I haven't plumbed its depths yet but I'm so happy to hear your perspective (attitude and experience).

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 5:19 pm

darkhorse wrote:
Thu Nov 01, 2018 9:17 am
I am very sorry about the diagnosis

There is no best way but here's how I would approach it

1. Obtain second opinion about diagnosis, treatment plan, possible clinical trials and most importantly prognosis at bigger center such as MD Anderson

2. Reflect on prioritizing from happiness perspective. if you (your husband) truly knew exact time you have in hand, how would you like to spend that time. Is it work, leaving money for kids or getting rid if debt, spending time at home , travel.. whatever it is do that. With dual income family with good life insurance etc, rest of the things will fall into place. I wouldn't spend substantial time doing anything at this point that would not generate positive experience.

3. This may be harder part but nonetheless need to decide within 3 to 6 months. Decide about end of life care options. I pray that he may not need to exercise that for decades to come but any of us can be in a situation having to make decisions regarding ventilator CPR etc. Unless one helps family understand one's wishes, it puts family in great deal of stress to make decisions on their own.

Good luck
Thank you! I appreciate the validation on #1 and yes, it is funny but some things seem to have shifted already in importance/unimportance for us and luckily we seem to be tracking similarly so far re: #2. I do think we need some uninterrupted kid-free time to talk a bit more freely about our/his bucket list. #3 was never hubbie's priority, but with him bringing up needing a will last week, I am confident we'll get those other life documents at the same time (I have mine). I agree, I want his wishes in writing -- for myself and for his family and our kids -- so everyone knows what he wants. Including, I just realized, I need him to write down what he wants for "after". Yup, definitely need a professional. Thank you for taking the time to write.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 5:21 pm

jharkin wrote:
Thu Nov 01, 2018 9:29 am
Having 4 immediate family members diagnosed with cancer in the last year (including a couple of multiple recurrences and one initial diagnosis of lymphoma at a young age - 38) I sympathize with difficult situation you are going though.

Definitely don't make any rush decisions and you are doing the right thing getting a second opinion (and if needed even a third. If its hard to find local expertise for a rare case I wouldn't rule out even traveling to go someplace like Mayo if possible).

Only other thoughts... trying to be careful not to break the medical advice rule... We found that none of the doctors would ever tell us anything cancer related is totally 100% guaranteed curable. They also suggested to us that we don't obsess too much on the 5 and 10 year survival rates as those statistics are always backward looking at patients diagnosed 5-10-or more years ago based on the best therapies that where available then. And things constantly improve so the outlook for new diagnosed patients *might be* better than those stats. Example: My mom has a very rare stomach cancer that 20 years ago had no treatment other than surgery. When she got diagnosed there was a pill form targeted therapy that put her in full remission. Well, 5 years later it recurred this summer but now there are 3 different approved targeted therapies and two more in clinical trial.

Point is outcomes get better every year, so stay positive and fight the good fight.
Oo! Love this example...thank you, thank you, thank you!

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by TRC » Sun Nov 04, 2018 5:22 pm

So sorry to hear about your situation. I'm sure your heads are spinning, but I'd encourage you to check out https://www.chrisbeatcancer.com/

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by AlphaLess » Sun Nov 04, 2018 5:29 pm

Very sorry to hear about your husband's diagnosis.
May the force be with you as you fight this unfortunate illness.

If you kids are older and mature, perhaps it makes sense to tell them sooner or later.
If you tell them with 6 months left, and your husband has very little quality time left with them, they will be resentful.
"You can get more with a kind word and a gun than with just a kind word." George Washington

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 5:35 pm

kaneohe wrote:
Thu Nov 01, 2018 10:05 am
prairieman wrote:
Thu Nov 01, 2018 8:43 am
My advice, as a fellow WM patient, is to live your life the same as if you did not have it. For me, this disease has been little more than a nuisance - constant monitoring with occasional treatment here and there. The worst part of the disease so far was the fear it caused in the first year after diagnosis. The fear eventually fades and this just becomes one of those individualized things each of us has to deal with.
Good advice here.........the pairing of the words "incurable cancer" in some cases is unfortunate and misleading.
In some cases they are incurable because they are slow growing and it is more difficult to selectively attack them than fast growing ones. Often ,though incurable , the slow growing ones can be treated, like a chronic disease like arthritis or diabetes, yet somehow the mental picture we have seems to differ greatly between cancer and the other diseases. We often forget that we are all inflicted with an incurable disease.......human mortality. The time scale here tends to be somewhat longer but uncertain in any case.

The good thing about a slowly progressing chronic condition is that there is time for medical science to make advances.

Interesting thought question: would you rather have
1) a fast growing cancer which has a high rate of cure (e.g. 90%) but a 10% chance of being unsuccessful and you being gone within a year or
2) a slow growing incurable but treatable cancer with reasonably high expectancy of living 5 yrs and perhaps more.
Thank you. Several posts so far have reiterated this point about the chronic nature of (most cases of) this type of cancer. I have the alternative example -- my mom died several years ago...it took the doctors 2 weeks to figure out she had cancer and then she was dead 2 weeks after that. It was agonizing in so many ways, but particularly the speed of the ride down. I have lots of observations about that period and won't go into all of them here, but generally yes, years later I am grateful that, since her cancer was truly incurable, the time we lived with that knowledge was compressed and she didn't suffer through likely unsuccessful treatment options with bad side effects. This case with my husband seems like the exact opposite -- we can see the train coming from miles away and are unable to get off the train tracks. I think I prefer it this way, with time to process, prepare, and even to hope...but yeah, this initial stage of fear sucks. Thank you for the reminder that we are all on the train tracks ultimately.

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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 5:48 pm

8foot7 wrote:
Thu Nov 01, 2018 12:44 pm
I didn't see anyone else mention this, but I think I would take a hard look at whether putting $24k/year in his 401k is the right call. You may well need that money for medical bills, and it could come in handy for bucket list items, and if the outlook is truly grim at 10 years then the tax deferral is not super compelling. I think I'd want to be as liquid as I could be.

Good luck, and so sorry.
Thank you! That is one of my questions I was seeking input on...our EF is good enough for normal "what if one of us loses their job" but no, fundamentally, I don't feel like we have enough liquid for some of the situations like the expensive medications mentioned by others. Why I hadn't gotten there myself yet I can't say, but just your note makes me think about it. Luckily CD rates are coming up. I'm not quite ready this instant to give up saving for retirement (or facing the tax bill) and maybe we need to think about compromising somewhere else to start increasing the EF.

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Nuvoletta
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 6:00 pm

prairieman wrote:
Thu Nov 01, 2018 3:48 pm
I posted earlier, as somebody with the same cancer as your husband (WM). I thought I’d add to my earlier post a couple of things:
(1) I received treatment ten years ago and did not need treatment again, until recently. In between were some of the best years of my life, and I am still very excited about the future.
(2) Most people with the disease eventually die with it rather than from it. New highly effective drugs exist already and new ones are being tested that should be ready to go in a year. BCL-2 inhibitors such as Venetoclax have potential of being essentially curative.
(3) We were and continue to remain up front with our kids and family, making sure they understand it is usually more of a chronic condition than it is a cancer. There were tears, but I think all appreciated the honesty and so it was worth it.
Hi, again, Prairieman!!!! So far in our reading we've read about people like you who have survived a long time with this disease and even died of something else. So far, your case sounded like more the exception than the rule, but together with some of the posts here pointing out that historical stats are considering historical treatments and other experiences with chronic cancers, I'm starting to feel cautiously more optimistic. We are also hoping that being assertive about seeking a specialist in WM will help us hear more about recent advances. We like my husband's first hematologist/oncologist and appreciate her diagnosis, and yet she seems a little surprised we wanted a second opinion, even that we wanted another consult with her after getting the latest results. Yet even the article she printed out for us recommended that most WM patients be pointed toward clinical trials. I'll be pinging you off-line to request the facility/doctor/area of the country you are getting treatment bc so far her first recommendation at MDA was a myeloma specialist and she wasn't sure he would know much more about WM than she does. :shock: Anyway, we like her, but yes, planning on at least a second opinion.

And thanks for #3...the way you describe it sounds a lot easier to share. Again, getting some help from a professional on how to do it.

I hope that a year or two from now I can "Pay it forward" to someone else the way you are doing here, sharing your experience with me.

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Nuvoletta
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 6:27 pm

dm200 wrote:
Thu Nov 01, 2018 3:51 pm
If he is still working, then get borrower pay credit life and disability insurance on credit union car and personal loans - and keep doing it as long as eligible.
Oo! I'll check this out...hadn't thought of this.

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Nuvoletta
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 6:42 pm

spencer99 wrote:
Thu Nov 01, 2018 8:34 pm
prairieman wrote:
Thu Nov 01, 2018 8:43 am
My advice, as a fellow WM patient, is to live your life the same as if you did not have it. For me, this disease has been little more than a nuisance - constant monitoring with occasional treatment here and there. The worst part of the disease so far was the fear it caused in the first year after diagnosis. The fear eventually fades and this just becomes one of those individualized things each of us has to deal with.
+1

As another (very recently diagnosed) WM patient I echo Prairieman's thoughtful advice.

To move this away from potentially off-topic medical advice and to financial thoughts... I believe available therapies offer a close-to average lifespan/life quality. At this point I am not changing any financial plans including delay of SS until age 70. I'll continue to assess those choices as health condition warrants.

K
Oh!!!! Thank you so much for weighing in. I truly appreciate your financial perspective. Hubbie's doctor was not so optimistic on the medical side, another reason to look a little further for our second opinion. If you feel comfortable, I hope you will PM me any information you are willing to share about if you have seen a specialist or doctor with any more experience with WM to gain this confidence. We are so fresh, we are working on the basics, but definitely willing to travel if necessary to get this second opinion. Again, back to the financial, I truly value hearing you sticking to your plan re: SS. Thank you for writing in.

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Nuvoletta
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Re: Spouse Diagnosed Non-curable Cancer -- what now?

Post by Nuvoletta » Sun Nov 04, 2018 6:45 pm

lthenderson wrote:
Fri Nov 02, 2018 9:08 am
Nuvoletta wrote:
Wed Oct 31, 2018 8:51 pm
Any advice appreciated. Nuvoletta
I'm on the other side of the coin dealing with my mom in the final stages of her two and a half year battle with brain cancer. Like others, don't rush decisions. Concentrate on the making of memories. We told our kids about grandma when they started asking questions. Until then we let them be kids. The last two and a half years have been some of the best years in our family.

Reading the book "On Being Mortal" by Atul Gawande brought me a lot of peace in this situation and now that the end is very near, I feel I'm prepared.
Thank you! Several gems here. So sorry for you and your mom and yet lovely to hear about making memories. Thanks for the book recc!

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