Author Topic: Spouse has Colon Cancer - What now?  (Read 11466 times)

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Spouse has Colon Cancer - What now?
« on: August 16, 2015, 04:06:20 AM »
My husband, 44 years old, has been diagnosed with colon cancer and it has spread to his liver.  After hours of research, I know it is advanced and the chances of survival is slim.  We have twin toddlers and I am not sure where to go from here.  How can we fight this?  What if we don't succeed, what can I do to financially prepare for the kids?  I live in Expensive Bay Area CA. Short/long term disability? What can I do to bridge our income gap so I can stay to home to care for spouse and kids?  We are not close to FI.  I have been reading and learning from this blog for the last two years, but not where I can stay home to care for family without income.  Any ideas?

Kaminoge

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Re: Spouse has Colon Cancer - What now?
« Reply #1 on: August 16, 2015, 04:14:34 AM »
I have no idea at all. I just want to say how sorry I am to hear you're going through such an awful thing and to wish the best to you and your husband as he fights this.

FLA

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Re: Spouse has Colon Cancer - What now?
« Reply #2 on: August 16, 2015, 04:52:33 AM »
former oncology and hospice nurse, the first thing I would do is find the closest hospital with the most advanced cancer care program.  Research who is the absolute best oncologist for his type of cancer within a reasonable traveling distance.  You may have to pay a deductible and travel a bit but so worth it.  If he gets treatment recommendations there, ask the doc to work with your DH's oncologist, so he doesn't have to keep paying out of pocket and traveling for treatment.  He is young, so he has that on his side, he may get into a study.  Take care of getting the best medical care first.

Then he should get short term and hopefully, long term disability from his employer but the very next thing I would do is start an SSDI application.  They pay a portion of income, and a stipend until age 18 for the kids,  and after two years on the program, you get Medicare (for a fee), they can take 2 yrs to decide.  Get referrals for the best SSDI lawyer in your area, you pay 25% of the settlement if they win, they lose, they get nothing. Getting all 3 of these is a PITA. Explain to your docs that you are going to need every note faxed to whichever company you are dealing with, mine have been great about this. Keep everything you get regarding his illness.  I did not keep the short term disability pay stubs, who would need those?  WRONG and PITA to fix. So I now keep every single piece of paper I am mailed or handed.  Once you get the SSDI lawyer, a good one says let them do the worrying, that's why you have them.  Usually this lawyer can handle LTD, too if you run into problems with them.  Be prepared for SSDI to be declined first go round, don't panic, with his diagnosis, he will surely get it at a hearing.  It's easy to say don't panic about the first denial, and even though I knew it was coming, I had to be peeled off the ceiling. But the lawyer was very calm and continued to say let her do the worrying. oh and if your health insurance is through him, compare Cobra plans with Obamacare, or if you have a good plan through your work, switch.

If you work for an employer with at least 50 people, usually you are entitled to 3 months FMLA, most often this is unpaid, you may be able to use accrued time so you have some money coming in.  FMLA just protects your job for 3 months.  It is very hard to decide whether to work or not when you do not have a clear idea of what his trajectory will be.  For instance, if he's ok home alone with someone checking in, maybe you can work so you have time for down the road?  You can also split FMLA time up, you do not have to take it all at once.

Next I would see an estate planning lawyer to figure out what you need, like a will, a trust, POA, etc.  Get a health care proxy or Molst form from the doctor. Then have the horribly tough conversation about what he wants and doesn't want done.  These 2 forms do not require a lawyer but they are crucial, give one to every doc and every time he goes to the hospital.  Shrink down a copy for your purse, keep it with you.  In my experience, around here, docs may briefly look at a living will but they base the plan on what he would've wanted according to the proxy (you). So if funds are tight, I would skip the living will, but that is a nurse's view, not a doctor's or lawyer's. 

try to put medical equipment in place sooner than later so if he all of a sudden has a horrible day, you have a walker or wheelchair.  Shower seats and a hose help a ton.

ok, let me know if I can help in anyway possible.  My heart goes out to you and your family

ShoulderThingThatGoesUp

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Re: Spouse has Colon Cancer - What now?
« Reply #3 on: August 16, 2015, 05:14:54 AM »
Occasionally my wife and I have conversations where we review what the plan is if one of us gets hit by a bus - what our daughter's situation will be, where she and the surviving parents will live, etc. Have you and your husband had that conversation before? When he's ready for it, maybe review the results to see if he still feels the same answers are correct.

Since you just found out it seems like your immediate problem to solve is that you have two toddlers who are going to notice that Something is Wrong.

Also, you haven't made it clear (from my reading) if you're working currently.

You and your husband have been dealt an awful hand here and it is good that you are thinking of your children.

G-dog

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Re: Spouse has Colon Cancer - What now?
« Reply #4 on: August 16, 2015, 06:13:21 AM »
Sorry you and family are facing this challenge.

Get all the powers for legal decisions that you can. If you do not have a trust, consider setting one up, or discussing with an attorney or tax expert on how you can avoid taxes or hassle on estate assets after your spouse dies. Even if there would be no taxes, getting everything moved into your name could be a huge pain, also may delay access - e.g. A bank account in your husband's name only May go through probate before you could access.

Get tapped into hospice care ASAP (usually tied to a prognosis that your husband is expected to have 6 months or less to live).

Regarding work, maybe you could switch to / find remote work that you could do from home. Flex jobs is one resource.  Your husband's employer may have an EAP - free access to help for all sorts of services, and lists of resources. For example, you may get an hour consultation with an attorney for free. Find out if he has an EAP and use it, the company has already paid for this resource.

If you can, have another responsible adult go to appointments, etc. - you are going to have a LOT of information dumped on you all at once. You may find it hard to process, may find it hard to think of or ask all the questions you need to ask, etc.

Remember that YOU need support and care too. Find at least a support group, friends, etc. as needed to help you get through this.

Support your kids, but don't try to completely shield them from what is happening. Help them process what is going on. They don't need to see everything, but don't try to pretend that nothing is wrong. I don't know if there are support groups for little kids, but sounds like a good idea.

Now - my personal opinion - medical workers in hospitals, etc. do not know how to deal with terminal diagnoses. Their focus is ALWAYS on a cure or at least treat symptoms. For example, they may deny morphine for pain because it is addictive, which is ridiculous if the prognosis is terminal. They may ask to do procedures to cover their ass or that have little to no chance of changing the prognosis because they don't change their approach regardless of prognosis - and they don't care how much this will cost you, how painful it may be, etc. they focus on possible cure regardless of statistics. This is fine if that is the treatment strategy you want, but most of us will get sucked in not knowing that procedure X only has a 0.1% chance of improving survival rate or timeline.

Most of all, good luck!

MayDay

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Re: Spouse has Colon Cancer - What now?
« Reply #5 on: August 16, 2015, 06:19:17 AM »
We've gone through this a bit in my family.

My mom has colon cancer, currently NED.  She got diagnosed at 39, and being under 40 means they look hard at why you have it.  (ETA:  I had a huge brain fart.  She was 49 when diagnosed, so your H is definitely under the bar for "something is really wrong for him to have colon cancer.  Under 50 is almost always genetic in some form.  Please message me or reply on here if you want more info about genetic stuff!)  Ends up she has a genetic form.  This might be applicable to your H, as he is quite young, especially if there are any other colon cancer incidences in his family. 

She initially went to the local hospital, and a sub-standard treatment plan was recommended.  Luckily she followed up at an excellent hospital 3 hours away (Mayo Clinic) and they were able to treat her appropriately.  Definitely do not just take whatever the first oncologist offers, unless you are already at the best cancer hospital you can get to.

My mom's had not spread, so they removed her entire colon and she is now ok with just surgery.  Sounds like it will be more involved for your H.

2nd family cancer case was my uncle.  He was ~44 when he was diagnosed with multiple myeloma.  He had a 6 year old, and died when he was 49 and my cousin was 11.  MM is basically incurable, so don't compare that outcome to your H!  My uncle initially worked but very quickly was unable to and ended up on SSDI as well as the disability program through an old pension he had (not even his current employer!).  Luckily that pension program continued to provide health insurance for him while he was on their disability, and he was able to live off the combined disabilities, so his nest egg was left largely intact to provide for his daughter after he died.  He was divorced, so the family cobbled together an network of friends and family who could help care for him- my retired grandfather would go for several weeks at a time, and others typically came for a week at a time, with local friends helping in between.  Not ideal, but we made it work.  You too will likely be able to rely on help from family and friends. 

I don't know when or how you can apply for disability through your husband's work, but another option may be for his colleagues to donate a week or a few days of vacation time to him.  I have seen that done multiple places, once for a young father over a year was donated to bridge the gap between short and long term disability.  He ended up making a full recovery and is now obviously very loyal yo his employer and coworkers!
« Last Edit: August 16, 2015, 08:26:36 AM by MayDay »

Argyle

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Re: Spouse has Colon Cancer - What now?
« Reply #6 on: August 16, 2015, 06:52:08 AM »
I'm so sorry you are facing this.  On the non-financial front, you may want to set up a Caring Bridge site (or another similar friends-helping website).  With an ill husband and two small children, you will have your hands full at times.  This allows people to know how to help often they want to but are lost as to how to do it.  You can also post updates there and not have to face going over the same information with dozens of callers.  And they can post messages of support.

Wishing you both strength as you move forward.

fa

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Re: Spouse has Colon Cancer - What now?
« Reply #7 on: August 16, 2015, 07:43:55 AM »
My heart goes out to you.  What a terrible situation.

Please make sure that your medical power of attorney is HIPAA compliant.  If you have an existing older one, it may not.  Without current HIPAA stipulations,  a medical power of attorney is worthless because the medical people are not allowed to talk with you.

maryofdoom

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Re: Spouse has Colon Cancer - What now?
« Reply #8 on: August 16, 2015, 09:22:43 AM »
I'm so sorry you are facing this.  On the non-financial front, you may want to set up a Caring Bridge site (or another similar friends-helping website).  With an ill husband and two small children, you will have your hands full at times.  This allows people to know how to help often they want to but are lost as to how to do it.  You can also post updates there and not have to face going over the same information with dozens of callers.  And they can post messages of support.

Wishing you both strength as you move forward.

This is a great idea. You could also designate a single person as the "point person" for any updates - you update your point person, he or she updates everyone else. That way you're not overwhelmed with explaining the same thing to thirty different people in a row. This system worked out really well for my husband when I had a brain hemorrhage - my sister called him daily and he gave her an update, then she emailed everyone in my family (and my boss, too). (I'm 100% fine now, all is mostly well.)

And at the risk of being overly practical: flowers and cards are very nice and are lovely gestures, but the thing I appreciated most when I was in the hospital and then home recovering was food that I didn't have to prepare. A friend who wanted to come visit asked me, "What do you need?" and even though I couldn't eat anything not on the approved hospital diet, I said, "Bring my husband a sandwich, he needs to eat something and he's not willing to leave long enough to get food." He complained ("Why did you tell her to do that? I feel like such a jerk asking people for food!") but he ate every crumb (and thanked me later). Tell your point person what you and your kids like to eat and outsource your food as much as you can.

I'm so sorry to hear about your situation. That really, really sucks.

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Re: Spouse has Colon Cancer - What now?
« Reply #9 on: August 16, 2015, 09:37:33 AM »
Yikes. Best wishes to your family!

The_path_less_taken

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Re: Spouse has Colon Cancer - What now?
« Reply #10 on: August 16, 2015, 09:45:21 AM »
I am so very sorry you and your family are experiencing this.

The oncology nurse advice above sounds spot on, as do many of these suggestions.

A friend who died of lung cancer once screamed in frustration at his caregivers because they kept saying he was "dying of cancer".

His reply: "I'm not dying of cancer you fucking morons. I'm living. I have cancer. It ain't helping, for sure, but we're all damn well going to die. Of something. Meanwhile...I'm living. Treat me as such."

That struck me to the core. So while I'd ask him how he was feeling, what he needed, I also would ask him the things I'd normally talk about: did you see the new Jurassic, are you into Game of Thrones, any idea why my laptop gave me a piss/green screen and wouldn't boot up the other day?

It made me his favorite person. To be treated as though the cancer wasn't the only thing in the room.

Good luck. I know that the cancer trials are doing amazing things...where they actually target the chemo to your particular strain of cancer, etc.

Thinking good thoughts for you both.

totoro

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Re: Spouse has Colon Cancer - What now?
« Reply #11 on: August 16, 2015, 09:54:36 AM »
My husband, 44 years old, has been diagnosed with colon cancer and it has spread to his liver.  After hours of research, I know it is advanced and the chances of survival is slim.  We have twin toddlers and I am not sure where to go from here.  How can we fight this?  What if we don't succeed, what can I do to financially prepare for the kids?  I live in Expensive Bay Area CA. Short/long term disability? What can I do to bridge our income gap so I can stay to home to care for spouse and kids?  We are not close to FI.  I have been reading and learning from this blog for the last two years, but not where I can stay home to care for family without income.  Any ideas?

Big hug.  I've been through something sort of similar which I will not get into here.  What I will say is:

- you will adjust to whatever the new reality is, it is going to take time, information helped me a lot - knowing the prognosis is much better than being in limbo and getting through grief to acceptance and ability to take action is tough but you have to do it
- check the workplace benefits for short-term, long-term disability and life insurance - if you have these the financial side will be much easier
- there will be support groups for this in your area - in our case the cancer agency runs all sorts of them, including groups for kids and they have lots of good advice on how to present this to kids and individual counselling available for kids
- I don't really recommend the online chat-type sources as people post the worst case scenarios a lot, until you know more I would seek information from the doctors and local support groups or reputable online sources like the mayo clinic

Once you have the information about the above you'll be able to plan better.  You may need to take a some time off work during surgery/radiation/chemo treatment as there are a lot of appointments - daily in some cases.  You might want to reach out to family and friends and volunteers to help.  People do want to help and it is just fine to accept it.  Don't try to do it on your own.

FLA

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Re: Spouse has Colon Cancer - What now?
« Reply #12 on: August 16, 2015, 10:43:19 AM »
I would not get referred to hospice right away unless a very good oncologist has told you nothing more can be done. I cannot recommend enough getting a second opinion from an oncologist at a major cancer center first. Your husband is young, there may still be things to help him, new things in the works, etc. What have you been told?

And when the time comes for hospice, they generally come within 24 hrs after the referral, which you can make yourself, they then call the doc for information. It should not take long to get him on when the time comes. If you pursue hospice now, he is not able to continue or receive life sustaining, active treatment. There will not be more tests, chemo, radiation except on the rare chance these treatments are relieving the pain of the dying. For instance, radiation is very occasionally approved for a few sessions for bone pain not relieved by all other measures first, it is not approved every day for 6 weeks to treat colon cancer. 

I am a hospice nurse but I still suggest seeing the best first.  If/when he needs hospice, the way we tell docs about the 6 month thing is, "would you be surprised if this person passed in 6 months?".  Because some docs are cautious in referring because they've heard the 6 month thing for years.  Some patients stay on for 2 yrs, the team just has to document deterioration.  If you are ready for hospice or you are just not sure, have them come out to explain the program, no need to decide right then.  Hospice, at least the one I worked for, has programs for young children at no fee and your husband does not have to be on hospice for you to get advice on handling this with the kids.  You and he can also get bereavement counseling at no charge and not be on hospice either.

It's rare for me to not be suggesting hospice.  I guess I need to hear what you were told because you did not mention copious, odious treatments that have worn him out, not worked and he is done.

Abe

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Re: Spouse has Colon Cancer - What now?
« Reply #13 on: August 16, 2015, 10:46:43 AM »
Regarding the spread to the liver: is it multiple nodules or just 1-3? If the latter, resection or ablation is a possibility that has overall improved survival than other types of advanced colon cancer. I would recommend going to a comprehensive cancer center as they will be able to assess this, and also have clinical trials to consider.

Catbert

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Re: Spouse has Colon Cancer - What now?
« Reply #14 on: August 16, 2015, 07:29:35 PM »
Wow.  So sorry for what you're going through.

I'll try not to repeat the good advice you've gotten so far.   

I suggest you and DH read Being Mortal by Atul Gawande.  I think it's still on the best seller list so it should be easy to find. It's not specially about dying, but rather about making medical decisions and understanding oncologists.

Find out as much as you can about DH's company benefits.  Occasionally there are companies that allow you to make benefit changes annually.  If so, take advantage.  For example can you opt for for the more long term disability or  pay for the disability insurance with post tax money (so disability payments will be tax free) or can he up life insurance w/o a physical.

Okay, one piece of advice I have to repeat:  think about taking someone with you both to medical appointments.  It's easy to go blank and not accurately remember what is said.   
   


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Re: Spouse has Colon Cancer - What now?
« Reply #15 on: August 17, 2015, 04:02:26 AM »
Thank you for all of your helpful responses and well wishes! It has been tremendously helpful as I research his company's benefit and mine trying to piece together a battle plan.  Fortunately we have a family trust setup with an Advance Health Care Directive, similar to a Molst form.  My company offers Personal time off without pay, so I think I will use that first before the FMLA until he gets the surgery and starts chemo.  At this point, I am buying time.  Then it is the short /long term disability.  Does anyone know how long I typically have with short/long term disability? 

The realization smacked me, had we obtained FI, we would be just fighting the cancer.  But now it is a financial battle as well. My DH said, 'We will prepare for the worst and pray for the best.' 

We have our first round of doctor appointments this week. Our little guys asks lots of questions but in good spirits.  Keep us in your prayers!

Stachetastic

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Re: Spouse has Colon Cancer - What now?
« Reply #16 on: August 17, 2015, 06:01:40 AM »
I have nothing new to add to the wonderful advice you've already been given, but wanted to offer my support and well wishes. I will continue to think of you and your family, and send good thoughts your way!

Le Poisson

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Re: Spouse has Colon Cancer - What now?
« Reply #17 on: August 17, 2015, 06:14:53 AM »
More good thoughts coming to you. When my Mom was hurt in a car accident, we had VON nurses coming by with regularity. A number of local charities were great for stepping in and providing help ($$$ or equipment) to get the house liveable for her. Wheelchairs, chairlifts, portable toilets, hospital beds, etc. all showed up one after the next as she recovered.

If there is a nursing order near you, they may know what home changes will be needed for you to care for your husband in the house and make suggestions to keep him comfortable as he fights the good fight. Referrals to some charities will only be through certain agencies. This can be a PITA, but it protects the charity from abuse. If I remember correctly (I was 16 at the time) the charities who helped us were Knights of Columbus, Rotary Club, and possibly others.

Good luck in your fight.


rubybeth

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Re: Spouse has Colon Cancer - What now?
« Reply #18 on: August 17, 2015, 07:49:24 AM »
Hugs to you. Just wanted to add that a lawyer may not be necessary for your husband to file for social security disability; a disability representative may be able to offer advice. You can find one via the National Association of Disability Representatives: http://www.nadr.org/ (My dad is a member.)


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Re: Spouse has Colon Cancer - What now?
« Reply #19 on: August 17, 2015, 08:18:00 AM »
I'm so sorry for this heartbreaking news for you and your family.  Can I offer advice as a proxy for your real life friends?

They want to help but don't know how.  I had a friend who recently lost her husband very suddenly and was left with just her and her young son.  There was an immediate rush for us all to do everything to help her, but she was so overwhelmed emotionally and physically that she just couldn't process everything and kind of shut down for a while.  It was awful for her, and for us who were helpless.

Eventually someone came in and set up a support team for her to help her organize everything- a food person, a childcare person, a forms/legal person, etc.  The small core group of people talked directly to her and figured out what she needed, and then the rest of us worked to make sure it got taken care of.   It was great for us because we knew we were helping, and great for her because she wasn't overwhelmed and feeling guilty for asking people for stuff.  Let your friends be there for you!

Good luck with everything!  Best wishes to all of you!

totoro

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Re: Spouse has Colon Cancer - What now?
« Reply #20 on: August 17, 2015, 09:05:29 AM »
Disability benefits vary.  Contact the employer rep or insurer to get the info.  In our case the ltd lasts as long as there is substantiated disability as defined by the policy. In the case of cancer you are considered to be disabled during chemo and radiation and after that your gp is generally the conduit for info to the insurer.  First thing though is you need to get the plan info re. % of salary covered, duration and any Life insurance and other benefits.

MayDay

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Re: Spouse has Colon Cancer - What now?
« Reply #21 on: August 17, 2015, 11:15:35 AM »
STD is often something like 6 or 8 weeks, maybe up to 6 months.  Then LTD starts sometime after that.  Often there is a pretty big gap (months to a year) before LTD kicks in.  But it totally depends on the policy.  Both are likely some % of his normal salary, even up to 100% of it.  But the percentages may be different for each policy.  Often they depend on years of service- 20% pay per year up to 5 years, and then full pay, or something like that.  50-60% coverage is probably typical from what I have seen. 

mm1970

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Re: Spouse has Colon Cancer - What now?
« Reply #22 on: August 17, 2015, 11:37:04 AM »
My husband, 44 years old, has been diagnosed with colon cancer and it has spread to his liver.  After hours of research, I know it is advanced and the chances of survival is slim.  We have twin toddlers and I am not sure where to go from here.  How can we fight this?  What if we don't succeed, what can I do to financially prepare for the kids?  I live in Expensive Bay Area CA. Short/long term disability? What can I do to bridge our income gap so I can stay to home to care for spouse and kids?  We are not close to FI.  I have been reading and learning from this blog for the last two years, but not where I can stay home to care for family without income.  Any ideas?

:(

I'm sorry.

My husband is 47.  I have a toddler.  I just cannot imagine.

BeardedLady

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Re: Spouse has Colon Cancer - What now?
« Reply #23 on: August 17, 2015, 12:01:27 PM »
I'm so sorry this is happening to your family. Disability insurance policies vary. When I applied for LTD, I could choose for it to start after 45 days, 90 days, 6 months, or 1 year. It could also be lifetime benefits or to age 65 or for a specified number of years. Either find your policy and look through that, or call the insurer if you are still unsure. Good luck to you both.

FLA

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Re: Spouse has Colon Cancer - What now?
« Reply #24 on: August 17, 2015, 01:10:11 PM »
my STD was started 7 days from first being out of work, 60% of salary coverage, since I could no longer put money in Roth or 403B, 60% was fine.  Got that for 6 months, but required monthly MD updates.  LTD started, in theory, as soon as STD ended but it took a long time to get, an unbelievable amount of MD info, I got it without a lawyer and it paid back pay. It is 60% of my salary, as well.  It is supposed to continue first until I get SSDI, then a supplemental to SSDI until I turn 65.  However, lawyers have told me not to plan on the supplement to age 65, rarely paid out.  When/if I get SSDI, I have to pay LTD back all that I get in the settlement. So basically, my LTD is a "loan" plus a supplement I get to keep.  Does that make sense?  LTD is covering me while I await SSDI, so when it is settled I have to give them back what they paid to cover me but get to keep the difference in what I received in LTD above the SSDI amount.  If you happen to have a non-employer, private STD or LTD plan, you are golden. You can get both, your employer's and your own.

You probably do not need a lawyer for LTD  and STD but my family lawyer, my 2 lawyer friends, 2 of my docs, and anyone I ran into who has SSDI or has been through it with a parent, the first thing out of their mouths is "get an SSDI lawyer".  Mine has been wonderful and is saving me a lot of stress.  Just something to think about, you can get a consult for free. 

if your husband has a "skilled need", he can get VNA services.  Skilled need is many things,  post-surgery especially if he has an open wound, if he is significantly ill after chemo and requires a nurse to see him at least weekly, if he needs a venous access device flushed (like a port, or PICC line), some people get chemo through an IV device 24/7 at home, this is rarer than it used to be. Or if he needs PT/OT and cannot get out of the home to get it.  He has to homebound except for MD appts.  Needing an aide for a bath or such, is unfortunately, not a skilled need.  Insurance companies are very strict about this benefit, the average patient gets approx 6 wks of service. 

After you do the SSDI application (a lawyer helps with this, she had to totally re-do mine because I painted myself as better than I am, and I have cognitive issues so it was not organized well, she spent 3 1/2 hours interviewing me and doing the application.  I cannot imagine what would've happened had I sent mine in), for me it was approx a month later, I got my letter of denial.  I had to keep reminding myself that the the lawyer, my docs, plus I saw it with terminal patients- they turn almost everyone down.  Then you deal with a real person in a hearing and that's often when those that need it, get approved. But remember, everything goes back to the day you applied.  The sooner you do it, the more you will get in the initial settlement.  My docs kept telling me to apply, i was sure they were wrong and I'd be better "in a month", so I waited 9 (!) months to apply.  Do not make my mistakes! Lastly, should your DH pass, you will still get the settlement you would've received had he lived, including the monthly supplements for your children.  And then regular SS for widows with children.

someone said something about talking to the kids.  If they are toddlers, you have so much to consider with their developmental stage.  I would talk to a professional before going much beyond, "Daddy doesn't feel well, he's resting."  Toddlers do not understand that when an animal or a person dies that it is permanent.  They often regress to a prior level of development when a parent is sick.  You have enough going on, I wouldn't try to do this one by yourself. Talk to a professional to find out how best to phrase things, again, hospice bereavement counselors will help you with this for free and your DH does not have to be on the program.  Not that older kids are easier, but at least they grasp the basic concepts. 

American Cancer Society has many volunteers, for instance, rides to MD appts, call or look online, maybe they have something that could help.  Certain medical equipment, insurance covers, if not the ACS may have a bead on resources.  Churches often have donated equipment, food pantries sometimes have or know about a "community closet", you borrow what you need.  If you need equipment that you cannot find used, scour eBay and Amazon.  I need a tub transfer bench, retail $178, could not find one used or that I could borrow, found a new one for $40 plus $12 shipping on Ebay.  Of course, it takes a fall every single shower before I will swallow my pride and buy the damn bench, lol.  This may be too nitty gritty, I'm just throwing out things as I remember them, insurance will offer to cover a walker, something easily borrowed or bought used cheaply, but not tell you, if you accept it, they will not pay for a wheelchair down the line.  Wheelchair is much more expensive, let insurance pay for that.  When/if you get a wheelchair, consider if DH can propel himself in a traditional one, this is hard, if he will be pushed most of the time, request a transport chair.  it is much lighter to get in and out of the car and fits through some doorways where a traditional one will not. 

A book I highly recommend even though you are so busy, is Dr Ira Byock's the Four Things That Matter Most, it changed my life when I read it and countless families on hospice found it comforting and helpful. If your husband can still read, maybe have him try.  Because the 4 things that matter most are not metastatic cancer in a young man, are not wrangling to get STD, LTD and SSDI, are not scouring research to "find the cure", the Four Things he talks about are pretty spot on. 

you and your family have been on my mind, continued prayers sent

bogart

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Re: Spouse has Colon Cancer - What now?
« Reply #25 on: August 17, 2015, 01:31:46 PM »
I'm so sorry you and your husband are dealing with this.  I hope he'll be among those who beat the odds and live years beyond what was predicted, and also that whatever happens, you and he will be able to make decisions that you feel comfortable with and that maximize your time and happiness together.

Couple points of clarification (?)

My company offers Personal time off without pay, so I think I will use that first before the FMLA until he gets the surgery and starts chemo.  At this point, I am buying time.  Then it is the short /long term disability.  Does anyone know how long I typically have with short/long term disability? 

Typically, while having personal time off may simplify getting time away from work, I think those days would still count against your FMLA limit in any given 12-month cycle (so they don't mean you have more leave than anyone else with FMLA access would).  It's probably worth double-checking with your HR office to find out.

I believe disability insurance (short- or long-term) applies only to the person carrying it, so while it may mean your DH can continue to provide for the family during the time he's undergoing treatment/unable to work, I don't think it will otherwise make it easier for you take time away from work or care for him (of course $ helps, so I don't mean to diminish that).

Final thought, if a parent who has paid into the Social Security system passes away leaving dependent children, there are benefits for (I think) both the surviving spouse (as a parent to the dependents) and the children themselves -- something that can help with providing for them if life insurance is missing, or there's not as much as is needed. 

Easye418

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Re: Spouse has Colon Cancer - What now?
« Reply #26 on: August 17, 2015, 01:45:07 PM »
My husband, 44 years old, has been diagnosed with colon cancer and it has spread to his liver.  After hours of research, I know it is advanced and the chances of survival is slim.  We have twin toddlers and I am not sure where to go from here.  How can we fight this?  What if we don't succeed, what can I do to financially prepare for the kids?  I live in Expensive Bay Area CA. Short/long term disability? What can I do to bridge our income gap so I can stay to home to care for spouse and kids?  We are not close to FI.  I have been reading and learning from this blog for the last two years, but not where I can stay home to care for family without income.  Any ideas?

Terrible news at such a young age.  Coming from a family who lost Father 62 from Liposarcoma (Fatty Tissue Cancer) and Mother from Breast Cancer - 55, cancer has definitely affected my life. 

I second finding the best treatment center you can possibly find for that specific type of cancer.  Even if the chance of survival is slim, you should be able to buy some decent time together.


cchrissyy

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Re: Spouse has Colon Cancer - What now?
« Reply #27 on: August 17, 2015, 04:55:04 PM »
When my son had cancer, just under 2 years ago, the hospital social workers were fabulous for handling all the services we needed, like the disabled parking sticker, interfacing with work/school administration about leave, and applying us for (very low $) help from the various cancer organizations for help with the costs.  So, my advice is to get an oncology social worker to tell you what programs can help, and to find out for you what benefits are available form your employers and the government, and to do the applications for you.

I agree with the advice to go wherever the care is best. I'm in the SF area too, and in our case it was Oakland Children's Hospital, who were incredible, but for an adult I'd be looking in to Stanford and UCSF.  It's good advice to bring somebody else to the appointments, a very trusted friend or family member can drive you guys and help you remember everything that was said.

Also agree with the advice to designate one person to distribute the updates, or get a website for that. We used LotsaHelpingHands.com which let people sign up to receive my email updates, so I only had to communicate things once and then everybody important would know it. also, it included a group calendar function where I could ask for help and people could sign up.  We had meals brought 3x a week that way, from all sorts of friends/neighbors/church/etc, and when I needed other kinds of help i could post it there and it would get filled. You can also designate other trusted people as "coordinators" if you don't want to be the one managing that stuff. If you don't have the time/energy to set this up, get a friend to do it. That's what I did.

good luck!
« Last Edit: August 17, 2015, 04:56:37 PM by cchrissyy »

Bearded Man

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Re: Spouse has Colon Cancer - What now?
« Reply #28 on: August 17, 2015, 05:44:01 PM »
I'd talk to an attorney and financial planner. Hope things work out for you, good luck.

BCBiker

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Re: Spouse has Colon Cancer - What now?
« Reply #29 on: August 17, 2015, 07:53:22 PM »
I'm sure the doctors will fill you in on the details, but it will be very important to do molecular studies on the tumor.  There are two facets of molecular testing in your husbands colon cancer because he is so young.  First is what is called micro-satellite instability which can be associated with a hereditary cancer syndrome known as Lynch Syndrome.  If he has mutation in one of the proteins associated with this, your children and his relatives could potentially be at risk for developing colon and other cancers at a young age.

The second aspect of molecular testing is detecting targetable mutations in the cancer.  There have been some incredible breakthroughs in cancer treatment, particularly in lung, but there are also trials in colon cancer. 

I don't want to get into the weeds on this subject (this is one of my areas of focus) but it is very important that they do molecular tests on his cancer.

As some words of encouragement, being young does mean that he is stronger and will tolerate therapies better than someone older.  This is certainly an uphill battle and it is important to have appropriate expectations, but there is hope for some very high quality time remaining.  It pains me to see and hear when people have to go through things like this. 

I do have extensive knowledge with regard to these types of tumors so feel free to PM me if you have any questions regarding the results you get back.

MrsPete

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Re: Spouse has Colon Cancer - What now?
« Reply #30 on: August 17, 2015, 08:34:47 PM »
Like all the above posters, I'm sorry you're faced with this crisis.  I have no personal experience with all this, and I think you've received some good advice already on the medical side of things.  I'm sorry I can't add anything to what's been said. 

On the financial side, my cousins lost their father at a young age (also cancer), and they each received Social Security benefits until they were 18.  Though they didn't live extravagantly, their mother was able to stay home with them until the youngest were teens.  However, she had enough life insurance to pay off their small house, and she had five children, so she was receiving five Social Security checks. 

I suggest you prepare financially for the worst, and if things are better -- great!  With toddlers, a two bedroom apartment is enough.  Do you live near family who can help you?  If not, this might be the reason to move. 

And on a completely different though plane, take plenty of pictures NOW and have your husband write letters to the children.  These items could become treasured links to their father, if they aren't afforded the opportunity to know him later. 

FLA

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Re: Spouse has Colon Cancer - What now?
« Reply #31 on: August 17, 2015, 09:42:14 PM »
letters and videos

there is all kind of guidance on the web on approaches to legacy letters/videos because I am sure it must be difficult to know where to start.  Storycorp has helpful info

Scarter

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Re: Spouse has Colon Cancer - What now?
« Reply #32 on: August 23, 2015, 01:34:07 AM »
Thank you for all of your responses!  It has helped tremendously.  My mother-in-law and I are both going with him to all his medical appointments.  On good days, we take turns to drive him to and from work so not to take a risk of him passing out while he on the road.  He is going to work as much as he can until he starts on Chemo. He says it keeps him sane.  Dr. says no chance of surgery at this stage.  We have a designated person ready to report to family and friends.  I am not able to take Family Leave Act because I haven't been with this company a year.  However, I was offered time off to accompany DH to appointments and procedures (blessing). 

Is anyone familiar with chemo and what my DH should expect?  I want to be prepared for the chemo sessions. 

Abe

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Re: Spouse has Colon Cancer - What now?
« Reply #33 on: August 23, 2015, 07:18:24 AM »
Good luck to you all. The chemotherapy regimens for colon cancer usually cause fatigue, poor appetite, nausea and sometimes diarrhea starting after a few rounds. Longer term they can cause numbness or burning in the toes or hands. After a round of infusions, people are fairly tired for a day or two. Infusions are usually every 2 weeks and take several hours all since several medications have to be given slowly through the IV. Significant fatigue during or immediately after is common. The main thing to watch for at home is weight loss. Fatigue is very normal, but significant weight loss may force a hold on treatment. I recommend Ensure, Boost or some other nutrition drink three times a day. Light exercise helps preserve muscle mass and energy to some extent. I wish you all the best.

MayDay

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Re: Spouse has Colon Cancer - What now?
« Reply #34 on: August 23, 2015, 07:40:26 AM »
The chemo side effects I am most familiar with are the numbness in the extremities, and being really cold all the time in the hands and feet.  Loss of weight, as Abe said, is a problem, but younger, healthier patients tend to due better with that as I understand it. 

Best of luck to you.  You can always ask for a palliative care consult (the hospital should have a department, if not you can seek an outside hospice that also does palliative care) if the symptoms are very bad.  Palliative care, unlike hospice, doesn't require stopping treatment. 

crispy

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Re: Spouse has Colon Cancer - What now?
« Reply #35 on: August 23, 2015, 07:50:16 AM »
I am so sorry your family is struggling with this.  I did want to mention that some types of cancers/diagnoses get an automatic approval for SSDI.  We found this out when my father had cancer.  We expected the disability process to be long and arduous, but it wasn't based on his diagnosis.


esq

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Re: Spouse has Colon Cancer - What now?
« Reply #36 on: August 23, 2015, 08:41:07 AM »
My heartfelt thoughts and prayers of strength and health are going out to you.

If you have people wanting to help, there will be times when you will just want to rest, and having someone else take care of your babies will be a huge help, so don't forget to put that in your "list". 

Lots and lots of good advice here.  Take it in slowly.

lhamo

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Re: Spouse has Colon Cancer - What now?
« Reply #37 on: August 23, 2015, 09:52:21 AM »
So sorry you are going through this.  Hope the treatments are successful.

It is pretty easy to find out what your family benefit would be from Social Security should he not make it. 

A summary of the general benefits available to surviving kids and their caretakers (support available through age 16) can be found here:  http://www.ssa.gov/people/kids/#&ht=1&a0=1

And you can sign up for an online account and get his personal Social Security benefits estimate here:

http://www.socialsecurity.gov/myaccount/

I hope you never have to use it, but the survivor benefit is a big help in such situations.  I benefitted from it when my dad died of a heart attack when I was 15.  It ensured that my mom didn't have to go back to work at the time, which would have been hard for her (she'd been out of the workforce for 30 years in a field -- nursing -- that would have been hard to re-enter due to all the changes that had taken place during that time).


FLA

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Re: Spouse has Colon Cancer - What now?
« Reply #38 on: August 23, 2015, 10:01:27 AM »
good for him to keep working!  He will get chemo-fatigue, which is normal.  They will do lots of bloodwork.  One common thing is having a low white blood cell count, this makes him more prone to infections.  Good hand washing by everyone around him should be plenty, unless someone has an URI and is sitting on his lap, coughing in his face.  Ask for nausea meds to have at home in case he needs them.  Ask exactly what drugs he is on- there are fact sheets available for almost every one, if they don't have them, just get the drug names and we can see what info is available. 

Here is a good article on preparing for chemo and what to expect:

http://www.mayoclinic.org/tests-procedures/chemotherapy/basics/how-you-prepare/prc-20023578

Best of luck!

leighb

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Re: Spouse has Colon Cancer - What now?
« Reply #39 on: August 23, 2015, 10:52:45 AM »
Here's another resource: colonclub.com. When my father had colon cancer, I found this community to be very helpful, informative and loving.

cchrissyy

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Re: Spouse has Colon Cancer - What now?
« Reply #40 on: August 23, 2015, 11:00:32 AM »
"chemo" is not any one thing, but a mix of any number of medications. So, his side effects will depend on exactly what his meds are. Definitely a question for his medical team and not us. 
Especially since his case is inoperable, you guys need to know very clearly the expected benefits and negative effects of chemo in order to even make the basic decision of whether it is "worth it" to be doing the chemo.

Abe

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Re: Spouse has Colon Cancer - What now?
« Reply #41 on: August 23, 2015, 11:19:18 AM »
Its true that chemotherapy regimens vary, but the ones for colorectal cancer are standardized with exception of some of the newer monoclonal antibodies, which don't seem to cause common adverse effects on top of the underlying regimen. I do agree the exact details of the regimen should be discussed with his oncologist, but the side effects are fairly similar across the regimens.

wberkgal

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Re: Spouse has Colon Cancer - What now?
« Reply #42 on: August 23, 2015, 04:32:04 PM »
My brother was diagnosed with stage 4 colon cancer five years ago (already in the liver, unresectable there) and lived for 4 1/2 of those years. He had a decent quality of life for four years. He was about 10 years older than your husband when diagnosed, still relatively young for this cancer. He found the forums on colon cancer alliance helpful:

http://www.ccalliance.org/

Becoming involved in this organization, he also found about newer treatments and research just in the past few years. My best advice for you is to make sure your specialists are knowledgeable about the newer developments. Ask what kind of genome sequencing your husband is going to have. Ask your specialists about the conferences they have attended recently, reading, etc. My sister-in-law kept a list of questions for the appointments. Be proactive. Doctors can't keep up with all new developments and sometimes the doctor learned of things from my brother (he was very active in the CCA and even attended some conferences as a patient representative) even though the doctor was in a very large cancer treatment center in a major US city. Researchers are making good progress beyond chemotherapy and sometimes too much chemotherapy early affects ability to have other treatments later, so thinking of colon cancer as a chronic disease can be helpful. My brother actually died of the effects of prolonged chemotherapy, not the cancer itself.

Your treatment team should include, in addition to doctors and nurses, a nutritionist, a social worker and a psychiatrist/psychologist/therapist. Lean on them, don't try to figure out everything about how to deal with this yourselves. Let your treatment team know about any side effects--there are pills to reduce nausea, for example. Also, try to get things scheduled as efficiently as possible so that you can live your lives, not arrange your lives around medical appointments. Medical people seem to be unaware of the value of a patient's time!

That said, your husband may live quite a long life with this disease, there's just no way of knowing that now.

As someone mentioned earlier, this may be a disease that leads to automatic approval of disability benefits. It was in my brother's case. There was no need for appeal, lawyers, etc. His long-term disability provider helped with the initial paperwork, most likely because the SSDI money is subtracted from the LTD money. My brother wanted to, and was able to go back to work part-time during years 2 and 3, and the LTD provider was quite cooperative. Although he did not qualify for SSDI for those months, the LTD provider made up the difference between the part-time salary and his benefit amount.

Good luck to you and your husband on your journey.
 




totoro

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Re: Spouse has Colon Cancer - What now?
« Reply #43 on: August 23, 2015, 08:42:26 PM »
Just wanted to send another big virtual hug. 

homehandymum

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Re: Spouse has Colon Cancer - What now?
« Reply #44 on: August 23, 2015, 09:26:24 PM »
I'm sorry to hear this. 

Praying for strength and good sleep and a good outcome for you all.

frugaldrummer

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Re: Spouse has Colon Cancer - What now?
« Reply #45 on: August 24, 2015, 12:05:58 AM »
He needs to have the Colaris genetic test (by Myriad) which tests for lynch syndrome and other genetic causes of colon cancer.  This is important for your children (if your husband is positive for Lynch, testing the children when they're older will tell you if they are at risk or not). 

It also may be very important in decision making for your husband's treatment - for instance, Keytruda, a promising new drug, appears to work in colon cancer but only on the people with these genetic syndromes.

http://www.bloomberg.com/news/articles/2015-05-29/merck-drug-helps-colon-cancer-patients-with-dna-repair-defect

Also look into cannabis oil (the low THC kind) which actually does have basic science research behind it, and metformin (a type 2 diabetes drug with anti-cancer effects).