Anyone Stage 4 and still working?

cheatinlil

My husband has been on Short Term Disability for 4 months.  We were hoping he would go back next week but we changed our minds.  He is just not well enough.  His main problem is fatigue. I just worry about the "what ifs" he can't go back.  I don't want to be a Debbie Downer but I want to be realistic and plan for our future.  His health is my #1 priority.  Has anyone out there lost their job or is now on Government Disability because of this? 

a_oaklee

every day

My husband goes to work every day.  He should retire, in my opinion.  He loves working.  He did reluctantly give up nights and weekend farming.  Couldnt physically do it.  He is almost 4 years stage 4 diagnosis and in his late 60s.  

Richgels1

Still Working

Hi, I'm stage IV for a year now. Still working but am planning on filing for dissability at the end of the year. Remember that it takes 6 months for SSD to kick in so apply early as possible if you think he won't be going back to work. The fatigue in my experience does not get any better over time as long as he is on medication. I've had surgery twice and been on Sutent and Votient so let me know if I can offer any futher advice. Best wishes, Scott

cheatinlil

Richgels1 said:

Still Working

Hi, I'm stage IV for a year now. Still working but am planning on filing for dissability at the end of the year. Remember that it takes 6 months for SSD to kick in so apply early as possible if you think he won't be going back to work. The fatigue in my experience does not get any better over time as long as he is on medication. I've had surgery twice and been on Sutent and Votient so let me know if I can offer any futher advice. Best wishes, Scott

Interesting extreme

Interesting extreme differences in the two of you that replied. 

 

He is having a hard time accepting he may not go back which makes it hard to plan.  The Oncologist said he will be on the pills until they stop working so we hope he is on the pills for the rest of his VERY long life   He had Votrient and now Inlyta chemo pills and one surgery.

 

We haven't been on this journey long but when he was working it was hard for him.  He pushed himself and I pushed him.  He ultimately got a new tumor that I am predicting is because he wasn't allowing his body to rest and heal.  Now he has been off work for 4 months and the treatment is working again.  It may not be related but time may tell. 

Thanks for the heads up on SSD.  The end of December we may need to look into that.  I just found out his LTD ends 6/2016.  I have also heard it is best to hire a lawyer because it is so hard to get SSD.

Dutch1

I took the disability

I found out that I was Stage 4 three years ago, at age 62.  I went on SSD after six months.  I didn't think too much about going back to work.  I felt that I couldn't handle it because of fatigue and because other side effects of the medication made for annoyances and compromises which I know would make me ineffective at work.  Besides, the surgeon's statistics as to life expectancy for Stage 4 folks was downright lousy and I wasn't going to waste my remaining time working, if at all possible (financially).  Absolutely no regrets about that decision.

Going on SSD is not difficult.  You can't start for six months, but Stage 4 kidney cancer is an automatic qualifier for SSD.  The Soc Sec representative was tough with me about the SSD application until she found out that I was Stage 4 RCC.  Then, she became the most helpful governmental representative you can imagine.

I believe that ingrediants for success against this disease includes good diet, rest and removal of stress.  Work is not always compatible with these.

Best wishes. 

Dutch

cheatinlil

Dutch1 said:

I took the disability

I found out that I was Stage 4 three years ago, at age 62.  I went on SSD after six months.  I didn't think too much about going back to work.  I felt that I couldn't handle it because of fatigue and because other side effects of the medication made for annoyances and compromises which I know would make me ineffective at work.  Besides, the surgeon's statistics as to life expectancy for Stage 4 folks was downright lousy and I wasn't going to waste my remaining time working, if at all possible (financially).  Absolutely no regrets about that decision.

Going on SSD is not difficult.  You can't start for six months, but Stage 4 kidney cancer is an automatic qualifier for SSD.  The Soc Sec representative was tough with me about the SSD application until she found out that I was Stage 4 RCC.  Then, she became the most helpful governmental representative you can imagine.

I believe that ingrediants for success against this disease includes good diet, rest and removal of stress.  Work is not always compatible with these.

Best wishes. 

Dutch

Thanks Dutch!
Good to know. 

Thanks Dutch!

Good to know.  Maybe we will try on our own with SSD first without getting a lawyer.  Getting my husband to a place where he can accept it is another big thing.  What have you heard from the surgeon's statistics as to life expectancy for Stage 4??!  I can't seem to pin them down.  I guess I hear 5 - 9 years.  I often think about cashing in some 401K and taking time off to spend time together.  I have taken a week of unpaid leave in August and another week of unpaid leave in September.  But because of his fatigue, we just stayed home and napped.  It was kind of nice though!  But to me it wasn't long enough to feel like we are making the most of a bad situation.  We have two kids still at home age 11 and 15 so we can't really go anywhere.  We all 4 went to Vegas for Spring Break in March.  That was nice but one night he just stayed at the hotel while me and the kids went to a show because he was out of energy.  I just don't want to have any regrets.  I'm struggeling with the timing of it all and juggeling all the bills.  I'm blessed with a job that can provide while he is out.  I want to be home with him but we have bills to pay.  We have a 15 year mortgage that I have thought maybe I should refinance for 30 years so we will have more money.  My brain is on over drive trying to figure it out.  Thanks for listening!

foxhd

cheatinlil said:

Thanks Dutch!
Good to know. 

Thanks Dutch!

Good to know.  Maybe we will try on our own with SSD first without getting a lawyer.  Getting my husband to a place where he can accept it is another big thing.  What have you heard from the surgeon's statistics as to life expectancy for Stage 4??!  I can't seem to pin them down.  I guess I hear 5 - 9 years.  I often think about cashing in some 401K and taking time off to spend time together.  I have taken a week of unpaid leave in August and another week of unpaid leave in September.  But because of his fatigue, we just stayed home and napped.  It was kind of nice though!  But to me it wasn't long enough to feel like we are making the most of a bad situation.  We have two kids still at home age 11 and 15 so we can't really go anywhere.  We all 4 went to Vegas for Spring Break in March.  That was nice but one night he just stayed at the hotel while me and the kids went to a show because he was out of energy.  I just don't want to have any regrets.  I'm struggeling with the timing of it all and juggeling all the bills.  I'm blessed with a job that can provide while he is out.  I want to be home with him but we have bills to pay.  We have a 15 year mortgage that I have thought maybe I should refinance for 30 years so we will have more money.  My brain is on over drive trying to figure it out.  Thanks for listening!

My story

is the same as Dutch's. I had no interest working the last year of my life. I'm thankful for the SSD. Haven't worked in 4 years now and don't miss it one bit.

a_oaklee

I agree its not necessary to

I agree its not necessary to have a lawyer.  Stage 4 is automatic acceptance. 

What a person does for a living is probably a deciding factor re employment.  My husband is able to be in an office.  There is a bathroom nearby.  The other factor is whether or not the person desires to continue work.  Some people would never want to retire.  My husband loves work.  I think it probably helps him feel better.  He no longer can do what he really would prefer doing.  He is on his third targeted therapy, 2 cyberknife, 2 general radiation treatments, 2 surgeries.  The pain and fatigue is the worst.  He does take ritalin to have energy and participate in activities.  

I personally believe the choice to work or not is my husbands.  It is hard on me, because i would rather be doing something else together.  He is just trying to live the way he did b.c.. before cancer.   Its definitely important for you to figure out finances.

NewDay

a_oaklee said:

I agree its not necessary to

I agree its not necessary to have a lawyer.  Stage 4 is automatic acceptance. 

What a person does for a living is probably a deciding factor re employment.  My husband is able to be in an office.  There is a bathroom nearby.  The other factor is whether or not the person desires to continue work.  Some people would never want to retire.  My husband loves work.  I think it probably helps him feel better.  He no longer can do what he really would prefer doing.  He is on his third targeted therapy, 2 cyberknife, 2 general radiation treatments, 2 surgeries.  The pain and fatigue is the worst.  He does take ritalin to have energy and participate in activities.  

I personally believe the choice to work or not is my husbands.  It is hard on me, because i would rather be doing something else together.  He is just trying to live the way he did b.c.. before cancer.   Its definitely important for you to figure out finances.

Working and Disability

Hi Cheatinlil,

I see from your profile that your husband is Stage IV and started Votrient, so I'm assuming that he is still on it.

I was still working when I became Stage IV and started Votrient.  The fatigue and brain fog were so bad, there was no way I could function well enough to work.  They allowed me to work from home, but I just couldn't be productive so I went on STD.  When that was about to run out, I went on LTD and applied for SSDI.  I knew that my performance was suffering and I couldn't chance being fired and losing my LTD.  There is  no way I could live off of SSDI only, much less afford COBRA on that income. I had been a workaholic all of my adult life, was single and my work was everything.  I was devastated when I had to give up my job and went into a very bad depression.  With antidepressants, I recovered and what amazes me is that , although I loved my work and it was everything to me, I now don't miss it one bit.  It is such a relief not to have the stress of trying to keep up with a high stress job while dealing with side effects of treatment.  It sounds like it would also relieve a lot of stress for you.

Stage IV RCC is on the Social Security Compassionate Allowance list which means that the application will be fast tracked.  Mine was approved in a couple of weeks.  You don't need to waste money on an attorney.  I did it all over the phone.

People have very different opinions about whether to continue working.  Some of us just can't because the side effects are too bad.  For some, the side effects are manageable.  Some want to work in spite of side effects because they still enjoy their work and it gives them satisfaction.  For some, the side effects are manageable, but they retire or go on SSDI anyway because they want to spend their remaining time with family and doing things they enjoy.  Everbody is different.

If he is not on your insurance, you may want to add him before he goes on disability unless you would rather he be on COBRA but that is very expensive.  If you decide to do that, let me know because there are some things you need to know.  If he applies for SSDI, his payments will start 5 months from the date of disability.  After another 2 years, he will qualify for Medicare.

If you are going to refinance your home, you might want to do that while he still has a job if his income might affect your ability to get a mortgage approved.

I hope all goes well for you both.

Kathy

MattInVa

NewDay said:

Working and Disability

Hi Cheatinlil,

I see from your profile that your husband is Stage IV and started Votrient, so I'm assuming that he is still on it.

I was still working when I became Stage IV and started Votrient.  The fatigue and brain fog were so bad, there was no way I could function well enough to work.  They allowed me to work from home, but I just couldn't be productive so I went on STD.  When that was about to run out, I went on LTD and applied for SSDI.  I knew that my performance was suffering and I couldn't chance being fired and losing my LTD.  There is  no way I could live off of SSDI only, much less afford COBRA on that income. I had been a workaholic all of my adult life, was single and my work was everything.  I was devastated when I had to give up my job and went into a very bad depression.  With antidepressants, I recovered and what amazes me is that , although I loved my work and it was everything to me, I now don't miss it one bit.  It is such a relief not to have the stress of trying to keep up with a high stress job while dealing with side effects of treatment.  It sounds like it would also relieve a lot of stress for you.

Stage IV RCC is on the Social Security Compassionate Allowance list which means that the application will be fast tracked.  Mine was approved in a couple of weeks.  You don't need to waste money on an attorney.  I did it all over the phone.

People have very different opinions about whether to continue working.  Some of us just can't because the side effects are too bad.  For some, the side effects are manageable.  Some want to work in spite of side effects because they still enjoy their work and it gives them satisfaction.  For some, the side effects are manageable, but they retire or go on SSDI anyway because they want to spend their remaining time with family and doing things they enjoy.  Everbody is different.

If he is not on your insurance, you may want to add him before he goes on disability unless you would rather he be on COBRA but that is very expensive.  If you decide to do that, let me know because there are some things you need to know.  If he applies for SSDI, his payments will start 5 months from the date of disability.  After another 2 years, he will qualify for Medicare.

If you are going to refinance your home, you might want to do that while he still has a job if his income might affect your ability to get a mortgage approved.

I hope all goes well for you both.

Kathy

Thoughts

I am stage IV Grade IV, mets to my lungs, had my right kidney removed at the end of Aug. I started Votrient 19 days ago. They gave me a very poor prognosis due to the Grade IV nature of my tumors. My first ONC said to plan for a 1-2 year life expectancy. I believe that it will be a good bit longer than that, proof is in the boards here.

Votrients side effects have been mild so far. I do get bouts of nausea during the days and sometimes at night. 

I am a bit younger at 45 than many here, but I get tired working for more than a couple of hours. I have a small mechanic shop so my job is physically demanding.  I am considering SSD also although  I have enough income from my property rentals to live on, but not very well.

I to have considered starting to liquidate some of my 401k, since I am single with no dependents or heirs. My understanding is 401k can be used for medical expenses without penalty. That would free up money for other things I want to do.

Its very difficult planning life around this disease. I have a good savings and don't want to burn through it, but I don't know what my future holds so I don't want to deny living either.

I appreciate the information that RCC Stage IV is a SSD fast track. Its something for me to look into.

I am also a vet and with SSD probably eligible for a military pension.

Matt

dhs1963

Stage four and working...

I am 51; was diagnosed stage 4 at 49 with a solitary met to my lung.  So far, my treatment has been surgery to remove the kidney and the met.  No meds.  I am working full time.  If it comes back, and they put me on meds, I will use my disability insurance (65% of my salary) if it recurrs.

 

 

Footstomper

dhs1963 said:

Stage four and working...

I am 51; was diagnosed stage 4 at 49 with a solitary met to my lung.  So far, my treatment has been surgery to remove the kidney and the met.  No meds.  I am working full time.  If it comes back, and they put me on meds, I will use my disability insurance (65% of my salary) if it recurrs.

 

 

Stage 4 and in denial

I'm a teacher and I love my job, teaching the upper years of high school about History, Classics and Philosophy. Got diagnosed May 2013 and worked until surgery at the end on the month. Started IL2 in the school holidays and returned about three weeks into the school year. October 2013 went for another round of IL2 which went horribly wrongPneumonia Pleurisy, colitis and the **** really hit the fan. 

I didnt return until march 2014 and then only part time. I worked only part time 2014/15. I tried to work full time but Sutent and Votrient kept me sleepy and incontinent making it difficult to work a full week.I went back to work part time in August 2015, but Inlyta gave me the same symptoms and problems as the other drugs. Eventuall I passed out at work and spent a week in hospital with pneumonia.

Very reluctantly I have decided enough is enough. Too many close calls, the pneumonia has nearly done for me twice now. So I hang up my chalk and board eraser. What to do next I do not know. My dog is scared of my stringed instruments and no one seems interested in my ideas for a Phd.

I think I'll try avastin.

At least West Ham are on a winning streak

rjhillcbytwp

I'm 49, Stage IV, and still working full time

Like many others, I have been stage IV since initial diagnosis and now for almost four years.  I'm about to turn 49, so I'm a bit too young to retire, and besides that, what would I do all day alone?  I'm lucky enought that my wife and I both work for the same business, in the same building, on the same floor.  Additionally, we work four miles away from the Hillman Center in Pittsburgh.  So it would seem that every star aligned to allow me to continue to work. 

I did take five months off to have the nephrecomies, and for HD-IL2 treatments.  I work in Finance IT, and while my job is stressful at times I enjoy an incredibly understanding and accommodating manager and supportive team.  I disappear for long periods of time when fatigued and to deal with the occasional votrient side-effects, and no one asks why. They know. Some things you just can't hide.  I also get to work from home a few days each week to help with the cumulative effects of commuting.  Again, none of this is possible without my boss. 

I suppose having two children in college (and the accompanying tuition bills) is one of the things that keeps me going.  Or perhaps it is a combination of faith, naievity, stubbornness, hopefullness, and denial that keep me from applying for SSDI.  I managed to live to see their high school graduations, and it looks like I'll get to see my son graduate from college this coming spring.  If I'm lucky- I'll see both he and my daughter graduate from medical school.  Fancy that- they are both seeking to become physicians.  I'll keep working as long as the planets are properly aligned so I can help them get there.

I do appreciate the knowlege regarding SSDI that you all shared here.  I'll keep that in my pocket until I need it.

 

BDS

Just Call Me Crazy

When I was diagnosed with stage 4 RCC in May of 2012 many members of my family thought I should take disability retirement and file for SSD. Being as stubborn as I am, I said NO and went back to work.  Now, after almost 3 1/2 years and counting….. I am still working full time. I have to admit, the only reason I was able to work full time, tolerate the side effects of Votient is because I have an office job.I work in IT. If I was employed in any other trade/profession I do not think I could have done it.  I am currently in a clinical trial (NCT02178722) at HUP with the infusion drug Keytruda (Pembrolizumab) plus Investigational Drug INCB24360. Since entering the trial I have not suffered from any side effects what so ever – knock on wood! I have a very busy life and I feel great!  I should say in April I was diagnosed with a brain met. I came within 2 cm of filing my paper work, packing up my desk and calling it quits. My brain met was successfully treated with Gamma Knife and I returned to work.  So…. for right now, it’s I owe, I owe, it’s off to work I go!

PS

If and when I am removed from the clinical trial due to progression I will probably try one more medication; when that fails, I plan on putting in my paperwork. I am getting my next set scans shorty, right now I am suffering from really bad scan anxiety.

One final note, working full time with a stage 4 diagnoses of cancer is not a bowl of cherries. Since being diagnosed I have filed for FLMA, work has hired two people to do my job. I no longer perform most of the hands on work that I once really enjoyed. Now, I can only supervise my replacements.   - BDS   

todd121

Working

I had a solitary met to my adrenal gland which was removed in February. That made me Stage IV. No known mets at the moment. It's my second surgery in 3 years. Not on any treatment.

Still working full time. I actually applied for SSDI while I was out on STD in March. The only thing I heard from SS was a phone call or two. They asked if I had returned to work. I said yes. I've never heard from them again. I assume it's because even though I'm Stage IV, I have no inoperable mets. Annoyingly, I did the online application and I lost the account name and password they tell you not to lose so I haven't even been able to log back in to check the status. I had expected they'd snail mail me something at some point saying I was approved or denied, but they have not and it's been six months. If you do the online application, don't lose the account/password. They mean it when they say you can't recover it. I spent a lot of time on the application. I was hoping to know what's going on. Maybe I'll call them...

I applied just to see. I saw on their website that metastatic kidney cancer is a reason for approval. Still, they must take whether you're able to work or not into account. I really didn't want to quit working. However, I heard it was a good idea to apply because it takes a few months to kick in and you have a window of I believe 5 years to reactivate an old application and use the original date, so it made sense to apply as early as possible. Also, I thought if I got it and decided to go ahead and retire now, I could use that income to help me retire. There'd be no other way I could retire right now unless I want to be broke in a few years (particularly if I have to buy health insurance out of pocket).

The health insurance is the biggest pain for someone my age if trying to retire. To get similar coverage to what I have now (that lets me see the best doctors in my area), it would cost at least $800 or more a month. I don't feel like having that insurance is a luxury. From what I've heard the Obama care plans have many doctors either not taking the insurance or putting you way down the list for appointment priorities, so it's not as much of a help as you thought it might be. I guess it's better than nothing. However, if you have RCC, you really want to see competent specialists. It could be a matter of life and death- literally.

Todd

cheatinlil

todd121 said:

Working

I had a solitary met to my adrenal gland which was removed in February. That made me Stage IV. No known mets at the moment. It's my second surgery in 3 years. Not on any treatment.

Still working full time. I actually applied for SSDI while I was out on STD in March. The only thing I heard from SS was a phone call or two. They asked if I had returned to work. I said yes. I've never heard from them again. I assume it's because even though I'm Stage IV, I have no inoperable mets. Annoyingly, I did the online application and I lost the account name and password they tell you not to lose so I haven't even been able to log back in to check the status. I had expected they'd snail mail me something at some point saying I was approved or denied, but they have not and it's been six months. If you do the online application, don't lose the account/password. They mean it when they say you can't recover it. I spent a lot of time on the application. I was hoping to know what's going on. Maybe I'll call them...

I applied just to see. I saw on their website that metastatic kidney cancer is a reason for approval. Still, they must take whether you're able to work or not into account. I really didn't want to quit working. However, I heard it was a good idea to apply because it takes a few months to kick in and you have a window of I believe 5 years to reactivate an old application and use the original date, so it made sense to apply as early as possible. Also, I thought if I got it and decided to go ahead and retire now, I could use that income to help me retire. There'd be no other way I could retire right now unless I want to be broke in a few years (particularly if I have to buy health insurance out of pocket).

The health insurance is the biggest pain for someone my age if trying to retire. To get similar coverage to what I have now (that lets me see the best doctors in my area), it would cost at least $800 or more a month. I don't feel like having that insurance is a luxury. From what I've heard the Obama care plans have many doctors either not taking the insurance or putting you way down the list for appointment priorities, so it's not as much of a help as you thought it might be. I guess it's better than nothing. However, if you have RCC, you really want to see competent specialists. It could be a matter of life and death- literally.

Todd

I’m sorry we are all here but I really appreciate everyones feed

Foxhd you are the expert in all this so not working maybe what’s helping so much with your treatment!

a_oaklee  thanks for your feedback. I think my husband wants to work but physically can’t.  He loves people and talking to people but his job is physically demanding. Ritalin isn’t an option because of his high blood pressure.   I’ve been encouraging him to volunteer.  The financial part I’m trying to plan for him not to return because I think it is best for his health.  The worst thing that could happen is that he go back and can’t handle it and they will have to let him go.  Then we lose his benefits.  He can be added to mine but mine are much more expensive.  At some point we will have to do that and I’m grateful we have that option but I would like to put it off as long as possible.  It’s good to hear from another caregiver on this site!  We have our own set of issues.  I’ve been trying to find a caregiver support group. 

NewDay

He started on Votrient and was on it about 8 months then got a tumor on his spine.  He is on Inlyta now.  I use to be a workaholic too but it is so much better just to let some things go.  I’m so impressed with your story!

MattInVa

Thanks for sharing your story.  It is interesting.  My husband Oncologist is reluctant to give a prognosis.  At one point he said it could be 9 years then he said that changed when he found the tumor on the spine.  Now we have to wait to see how the scans are before giving another prognosis. My husbands tumors are on the kidney, spleen, lungs, and a lot of little ones in his abdomen.   I agree with you it is very hard to plan life around this disease!

dhs1963 I think I see a pattern that those on chemo pills get the fatigue to the point they can’t work long term.  It sounds like you have a good plan given the circumstances.

Footstomper I always love reading your posts.  You have a good attitude in spite of your circumstances.  I know you have had a tough time lately and I do wonder the same thing for you as I do for my husband.  Maybe it is the working that is making it worse.  I really don’t know but people say the body needs to rest to heal.  The acceptance of not working is a tough one.  God bless you!

Rjhillcbytwp

Having your job help support you is another key factor.  My husband job is having massive layoffs in the 4 months he has been out.  They also have reduced hours for those that have stayed.  Some have said if he was at work, he would’ve been let go.  So the Disability has been a life saver!  You used words to describe yourself that describes my husband:  faith, naievity, stubbornness, hopefullness, and denial.

 

BDS 

I follow your posts.  You are an oldtimer around here! J  I’m glad your trial is working for you!  It is interesting everyone here has the old Plan B, if this happens then that. 

Todd121

Interesting you applied and said you were working. I was under the impression you have to be not working in order to get it.  Newday mentioned after 2 years on SD, he will qualify for Medicare but I think you are right, real insurance is the way to go.  I will be adding him to mine.  I will have to add him and the kids and the cost is $540 a month out of my pocket.  That is CRAZY!  But worth it! 

I’m sorry we are all here but I really appreciate everyones feedback.

Footstomper

BDS said:

Just Call Me Crazy

When I was diagnosed with stage 4 RCC in May of 2012 many members of my family thought I should take disability retirement and file for SSD. Being as stubborn as I am, I said NO and went back to work.  Now, after almost 3 1/2 years and counting….. I am still working full time. I have to admit, the only reason I was able to work full time, tolerate the side effects of Votient is because I have an office job.I work in IT. If I was employed in any other trade/profession I do not think I could have done it.  I am currently in a clinical trial (NCT02178722) at HUP with the infusion drug Keytruda (Pembrolizumab) plus Investigational Drug INCB24360. Since entering the trial I have not suffered from any side effects what so ever – knock on wood! I have a very busy life and I feel great!  I should say in April I was diagnosed with a brain met. I came within 2 cm of filing my paper work, packing up my desk and calling it quits. My brain met was successfully treated with Gamma Knife and I returned to work.  So…. for right now, it’s I owe, I owe, it’s off to work I go!

PS

If and when I am removed from the clinical trial due to progression I will probably try one more medication; when that fails, I plan on putting in my paperwork. I am getting my next set scans shorty, right now I am suffering from really bad scan anxiety.

One final note, working full time with a stage 4 diagnoses of cancer is not a bowl of cherries. Since being diagnosed I have filed for FLMA, work has hired two people to do my job. I no longer perform most of the hands on work that I once really enjoyed. Now, I can only supervise my replacements.   - BDS   

I agree BDS

I couldnt have worked with stage iv without a very supportive management who employed other people to work with me and cover for me when I couldnt do it.

Frankly, now I am am retiring, I'm more scared of inactivity than I am of the disease.

MattInVa

cheatinlil said:

I’m sorry we are all here but I really appreciate everyones feed

Foxhd you are the expert in all this so not working maybe what’s helping so much with your treatment!

a_oaklee  thanks for your feedback. I think my husband wants to work but physically can’t.  He loves people and talking to people but his job is physically demanding. Ritalin isn’t an option because of his high blood pressure.   I’ve been encouraging him to volunteer.  The financial part I’m trying to plan for him not to return because I think it is best for his health.  The worst thing that could happen is that he go back and can’t handle it and they will have to let him go.  Then we lose his benefits.  He can be added to mine but mine are much more expensive.  At some point we will have to do that and I’m grateful we have that option but I would like to put it off as long as possible.  It’s good to hear from another caregiver on this site!  We have our own set of issues.  I’ve been trying to find a caregiver support group. 

NewDay

He started on Votrient and was on it about 8 months then got a tumor on his spine.  He is on Inlyta now.  I use to be a workaholic too but it is so much better just to let some things go.  I’m so impressed with your story!

MattInVa

Thanks for sharing your story.  It is interesting.  My husband Oncologist is reluctant to give a prognosis.  At one point he said it could be 9 years then he said that changed when he found the tumor on the spine.  Now we have to wait to see how the scans are before giving another prognosis. My husbands tumors are on the kidney, spleen, lungs, and a lot of little ones in his abdomen.   I agree with you it is very hard to plan life around this disease!

dhs1963 I think I see a pattern that those on chemo pills get the fatigue to the point they can’t work long term.  It sounds like you have a good plan given the circumstances.

Footstomper I always love reading your posts.  You have a good attitude in spite of your circumstances.  I know you have had a tough time lately and I do wonder the same thing for you as I do for my husband.  Maybe it is the working that is making it worse.  I really don’t know but people say the body needs to rest to heal.  The acceptance of not working is a tough one.  God bless you!

Rjhillcbytwp

Having your job help support you is another key factor.  My husband job is having massive layoffs in the 4 months he has been out.  They also have reduced hours for those that have stayed.  Some have said if he was at work, he would’ve been let go.  So the Disability has been a life saver!  You used words to describe yourself that describes my husband:  faith, naievity, stubbornness, hopefullness, and denial.

 

BDS 

I follow your posts.  You are an oldtimer around here! J  I’m glad your trial is working for you!  It is interesting everyone here has the old Plan B, if this happens then that. 

Todd121

Interesting you applied and said you were working. I was under the impression you have to be not working in order to get it.  Newday mentioned after 2 years on SD, he will qualify for Medicare but I think you are right, real insurance is the way to go.  I will be adding him to mine.  I will have to add him and the kids and the cost is $540 a month out of my pocket.  That is CRAZY!  But worth it! 

I’m sorry we are all here but I really appreciate everyones feedback.

SSD

Some Info for those wanting to apply for SSD.

 

I called them today after applying online and they said due to my cancer type and stage they make it a top priority. At least thats the story they told me. They will retro me back to the day I was diagnosed since I have not been able to fully work since then.

 

Straight from the horses mouth.

https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022205

If the mets are inoperable, I believe it meets the criteria for unresectable cancer.

 

 

In addition, Vets who served in combat or during wartime are eligible for a military pension even though it is not service related. 

 

From the VA

In addition to meeting minimum service requirements, the Veteran must be:

• Age 65 or older, OR
• Totally and permanently disabled, OR
• A patient in a nursing home receiving skilled nursing care, OR
• Receiving Social Security Disability Insurance, OR
• Receiving Supplemental Security Income

 

Richgels1

todd121 said:

Working

I had a solitary met to my adrenal gland which was removed in February. That made me Stage IV. No known mets at the moment. It's my second surgery in 3 years. Not on any treatment.

Still working full time. I actually applied for SSDI while I was out on STD in March. The only thing I heard from SS was a phone call or two. They asked if I had returned to work. I said yes. I've never heard from them again. I assume it's because even though I'm Stage IV, I have no inoperable mets. Annoyingly, I did the online application and I lost the account name and password they tell you not to lose so I haven't even been able to log back in to check the status. I had expected they'd snail mail me something at some point saying I was approved or denied, but they have not and it's been six months. If you do the online application, don't lose the account/password. They mean it when they say you can't recover it. I spent a lot of time on the application. I was hoping to know what's going on. Maybe I'll call them...

I applied just to see. I saw on their website that metastatic kidney cancer is a reason for approval. Still, they must take whether you're able to work or not into account. I really didn't want to quit working. However, I heard it was a good idea to apply because it takes a few months to kick in and you have a window of I believe 5 years to reactivate an old application and use the original date, so it made sense to apply as early as possible. Also, I thought if I got it and decided to go ahead and retire now, I could use that income to help me retire. There'd be no other way I could retire right now unless I want to be broke in a few years (particularly if I have to buy health insurance out of pocket).

The health insurance is the biggest pain for someone my age if trying to retire. To get similar coverage to what I have now (that lets me see the best doctors in my area), it would cost at least $800 or more a month. I don't feel like having that insurance is a luxury. From what I've heard the Obama care plans have many doctors either not taking the insurance or putting you way down the list for appointment priorities, so it's not as much of a help as you thought it might be. I guess it's better than nothing. However, if you have RCC, you really want to see competent specialists. It could be a matter of life and death- literally.

Todd

Todd,

It is my understanding that you cannot work and apply for SSD at the same time. If you work, your application is disqualified. You must be out of work the full six months before the benefits kick in. It will take 6 months for benefits to start. What you have heard about Obama care is false. You can pick the plan you want when you sign up. Doctors do not check to see if you have insurance through the ACA site and they certainly do not put you down on some priority list. The plan you pick is the same plan that other people have that will pay a higher premium for. If you stopped working and applied for SSD, Then signed-up for Obama care you would qualify for maximum credits towards premiums the first year becuase of you income level. This means your premium would be around 60 dollors and your max out of pocket for the year would be $500 dollors. The second year you would pay a bit more because you would receive a full year of benefits so you income level would be higher which is how they determine you premium cost. After two years you would automatically be enrolled in Medicare. Do some research and you will see that what I am saying is true. Hope this helps some. Scott

danbren2

Stage 4 and working full time!

Cheatinlil,

     I have had 4 surgeries and have been stage 4 since August of 2011.  I have had to take FMLA leave 4 times but have always been able to come back to work full time.  I am 57 years old, my last surgery was in April 2015 and it was to have a second brain tumor removed.  I have never had to do any other kind of treatments or meds for my cancer, it has all been handled through surgeries.  Hope to be able to work for a while longer!

                                                              Brenda

 

cheatinlil

danbren2 said:

Stage 4 and working full time!

Cheatinlil,

     I have had 4 surgeries and have been stage 4 since August of 2011.  I have had to take FMLA leave 4 times but have always been able to come back to work full time.  I am 57 years old, my last surgery was in April 2015 and it was to have a second brain tumor removed.  I have never had to do any other kind of treatments or meds for my cancer, it has all been handled through surgeries.  Hope to be able to work for a while longer!

                                                              Brenda

 

Thanks for your feedback

Thanks for your feedback Brenda.  It looks like it is the Chemo pills that makes it unbearable for most.  Lucky you got to have surgery!  Just Kidding... I'm impressed with you and your strength.  xoxoxo