Curious - Who is working- or on disability?

[tammylayne]

Trying to make that decision....having trouble at work due to inability to sit for long periods of time, focus and concentration is out the window. Primary doc and social worker would like to see me go on leave so I can work on getting my mind in a better place before treatment starts...whatever that may be when they finally figure me out.

I am just curious how many of you are working, and how many of you are not.....and why if you are willing to share. I have this guilt about going off on leave, and I know that is silly as I not only pay into this, but I also work for the company that provides the benefits.

I have 6 months at 100% coverage. I need to justify in my mind it is ok to do this. (Have been told I am too loyal to the job, not loyal enough to myself)

Would just love some feedback to give me food for thought.

[dj2158]

I am on disability now for vats surgery. I will start chemo again in a month and am going to try to go back to work while doing chemo. I did not work the first time back in 2007 and don't think I could have if I wanted to-Oxaliplatin. My onc and nurse said to stay home the first round to see what my round will feel like. In their experience with their patients and the regimen I will be having, what happens in the first round usually is true for the following rounds. The reason I want to try to work this time is to keep my mind busy. My mind is wandering now being home about the future, if this is going to come back again, etc....I don't know if I will be able to because I don't know what my side effects will be for me but if I can I will.

I, too, worry about my job and my department etc.... They have been wonderful to me so far and said they are willing to work with me this time also but i, also, have a hard time with this. You have to take care of you first. Do what is best for you. Your job will be there after your treatment.

Hope this helps.

Donna

[kimmercans]

I own my practice/business and did not have the liberty not to work through treatment. That being said, what I went through in my opinion warrented temporary disability if I had the coverage. It took everything I had to get out of bed and go to work. I was unsure of my bowels, my butt hurt, and I was exposed to colds/flu/strep from patients and my white count was 2. I had a cot in my office that I would crash on in between patients and at lunch. Now that I am feeling so good, I do look back and wonder how I did it. I will say though that coming to work forced me to focus on something else besides my cancer and it was a nice reprieve in that respect.

You have a disability policy that is in place for this exact circumstance. I would probably take advantage of it.

Best,
Kim

[BrownBagger]

I've worked all through since my dx early in 2009, but I have a lot of job flexibility and as a magazine editor, I do a lot of work from home. When I was recovering from surgery, I stayed home for a couple of weeks and was able to keep the magazines on schedule. We also put on trade shows, which involves travel and lots of long hours and some hard, physical work. Luckily, my treatment & surgery dates allowed me to participate in these events--but the timing was touch and go.

Lately, my heightened stress levels have been rubbing off on my coworkers. When that happens, I stay home and everyone (except my family, of course) is happy about that. I need to plan my upcoming surgery around next spring's trade show schedule, but from what I've been able determine, that shouldn't be a problem if all goes as expected.

Anyway, bottom line: After 27 years in the same job, everybody cuts me plenty of slack on my medical needs.

[pollo65]

I worked part-time during treatment because I work for a company that gave me plenty of flexibility. I had taken out an AFLAC short-term disability policy that came in very handy. I of course went through all my vacation and sick time. I am now back to work full time at 66 yoa because I am afraid that I can't get by on my retirement and social security. Sometimes I think it is irrational to plan ahead with a stage 4 diagnosis, but I am an optimist.
pollo65

[blakeswife]

Tammy,

The only time my DH took time off was for his colectomy & liver resection which ended up being a total of 4 weeks. Otherwise, he has continued to work full time through 3 chemo regimens. For him, working has been a great outlet.

He's -maybe- missed 3 days in almost 3 years (other then a planned vacation) ? Wow. I can't believe it's almost been 3 years.

Good luck in your decision.

Kathy

[lydia123]

We are working, but only about 75% time (yes, the caregiver here can't pull off full-time either - chemo isn't easy for my husband, and I can't do his share of the kid stuff without cutting back). We also telecommute as needed.

We are federal workers with good benefits and it is the slow season in our offices. If our bosses were less flexible about telecommuting, we'd have to take more leave.

If I were in your shoes, I would take the disability -- you can go back when you are ready, and if you aren't concentrating there's no point. You have a good reputation, it sounds like, and now's the time to enjoy the benefit of it. You needn't be out the full six months.

[Bev G]

I asked for and received social security disability shortly after I was diagnosed. I think I applied in January and received my first payment in April. They backdated it to January of 09. This will be life-long, and if I live to be 65, I will not get my full retirement benefit, just the disability amount, which I believe is about 1K less per month.

Best of luck in deciding, Bev

[Gaelen]

My local onc offered me disability leave at my first meeting - with the added comment "but I suspect that if you can't work through this, you will go crazy."

My co-workers and my bosses (mostly) have been terrific. In 2004, I was not at a job grade that was usually issued a laptop - but a vice president who had formerly been my site's director called my 2004 bosses, told them he'd authorize home broadband and telecommuting and whatever else I needed, that he'd carry the costs on his executive level cost center, and told them to build me a laptop right away. I already had 5 weeks of vacation and we get paid sick days, but I worked all of my non-chemo infusion days - either on site or from home. I couldn't work my infusion day 1 - it was a 9-hr day with a slow oxi infusion and avastin. I took vacation for NYC medical consults because I felt guilty - when I had to travel to NYC for monthly infusions, that changed to 'working off site' and I taught at the NJ site as part of my NYC trips or worked from my brother's home office on my company laptop.

My company builds cancer drugs. My co-workers have always been beyond supportive - offering second opinions, reading my scans, interpreting my bloodwork and more. As my original bosses started to retire, management's attitude changed a bit - I lost out on project management gigs and then ultimately promotions because, hey, I might die. Of course they couldn't *say* that, and couched it in phrases like "we want to spare you that kind of stress and utilize your skills more efficiently." But then when the last of those managers retired last year, she called me up and apologized to me - said she realized in retrospect that she had been holding me back and that I didn't need that kind of 'protection.' Nothing actionable, you know - completely she-said/she-said hearsay, but at least I felt better that I hadn't imagined being pushed aside by some of the managers.

The first operation, I took short term disability and came back to work after four months, and continued 11 more months of chemo. The second operation (liver resection), I ended post-op chemo after 3 months and went back to work from STD after five month. The third operation (recurrence), I stayed out for 5 months, 3 weeks and 3 days of my six month STD leave. Chemo was wiping me out - and I still had two more months to do. I did it - but I *know* I was not at the top or even the middle of my game on many days. I worked from home 3 days out of every 14 day infusion cycle. I made up some time on the weekend. I wouldn't have gone back at all - seriously considered long term disability at that point.

But in Sept. 2008, I knew that I only had 26 months until I turned 55 (November 2010.) I had 22 years invested in my company retirement plan. And in that plan, the difference between retiring before you are 55 and retiring the day after your birthday is enormous - for me, $1200/month. I figured I could tough out anything for 26 months. I have four more months to go - and I will get both severance because the site is closing, and my retirement. So for me, that was a good choice. I had to try. And I knew that I could always go on SSDI if things really became too hard. This last year has been a bear. I told my bosses that I was going to work 1 day from home for the rest of the year, and that may increase if working conditions don't improve. At this point, if they release me early without severance, it would be actionable because an active severance agreement is on the table. They aren't taking any chances.

But if you can take disability without compromising things like retirement plans or health insurance or the job itself, and you can take the time to focus on you and get better - DO IT! One big thing I have learned - you are not your job, or maybe - you are MORE than your job.

[Bev G]

Gaelen: You ALWAYS inspire and motivate. I will freely admit that no matter what, I don't believe I ever could have done it! Hell, I was rarely, if ever, out of bed during any of my three rounds of chemo--well not quite true, I guess I was usually in the bathroom. And this liver resection, HAH. I can just see myself dragging my ass into work with my wound vac. Obviously, I realize everyone's mileage varies. But, I'm willing to face it, I'm a wimp and you, woman, are a pragmatic super star.

Way to go.

Love, Bev

[KellyBelle]

I started out with part-time STD, because my boss was being completely irrational (even though I'd worked from home for 10 years setting my own schedule). He was counting every hour even though I'd averaged 50-60+ hours a week for years (got a new boss the week after I was diagnosed). Then after a few sessions the chemo fog set in and I started making mistakes. In the consulting business, I figured it would be better for my career in the long term to disappear for a while than to keep making mistakes (people will forget an extended absense, but they'll never forget if you screw up their $50 million dollar deal, and my clients were my lifeline). I just couldn't remember what I did five minutes ago, let alone the previous day, and was sending proposals out to clients twice, forgetting to return their calls (or calling them twice), etc. And an Excel spreadsheet full of numbers that I created myself suddenly looked like Greek to me.

I eventually went on LTD for the same reason (plus my boss kept asking me to travel, make presentations and go to conventions) and I couldn't do it. Physically, I could have worked through chemo with a desk job, but it was a real challenge mentally. That turned out to be a good thing, because when the economy hit the fan my entire department got laid off (not affecting my LTD). I'm actually still on LTD from my former employer's insurer and was recently approved for SSDI because of my neuropathy. Because my job also included a lot of travel and assessing commercial real estate and I've got permanent neuropathy in my feet, I need re-training for something else. So I go to school full time in hopes of working in the medical field with cancer patients. The Texas Department of Adult Rehabilitative Services pays 100% of my tuition and books.

If this was going to happen, the timing was right because marketing high-end consulting services put me in competition with much younger folks and age discrimination in the field I was in is very real. From what I hear, there's not nearly as much age discrimination in the medical field.

I feel confident that I've taken all the right steps to get back to work, and I'm fortunate to get to change careers mid-life (something not many single women with a mortgage have the opportunity to do). Luckily, I've never believed in carrying a lot of debt and have always lived within my means, so surviving on 60% of my previous salary has been relatively easy (I did have a pretty decent salary).

In a nutshell, there's a lot to think about beyond whether or not a person can physically show up for work every day.

Kelly

[Debbie a]

I was diagnosed July 31 2008 (my sons 4th birthday) i am a teacher so i was off for another months to get my act together and figure out the action plan. Well I started my chemo/radiation regimin my first day of work. September 6th i believe it was and finished Oct 10,2010 (the day before my birthday, Happy birthday to me) I worked everyday. I left work about 15 minutes early everyday to get the radiation. the chemo i did at home (xeloda). I then had about 6 weeks off then surgery. I had my colon/liver resection November 11, 2008 and went back to work after xmas break. I used sick days, people gave me days, and borrowed days (NYC allows you to borrow up to 20 days) I started my 2nd round of chemo 5fu and folfox on Dec 26, 2008 every other week until the end of april. I worked EVERYDAY. the days i received my chemo i left early (made them for fridays so i did not lose too much time, we got out of work early on fridays).

i thought i was done got my port removed and 2 weeks later i had a ct scan which showed a 3 cm spot on my left side of my liver. had sceduled surgery for the middle of july after my vacation that was already planned. but MRI a few days later showed 4 spots total the 3 little ones were minimal size but there which now changed the course of action. Surgery canceled and now doing 5 - 6 rounds of CPT11 and xeloda. Started before my vaction (June 29,2009) so my week off(2 weeks on 1 week off) was the week i went to disney. Had an MRI done in sept after 4 rounds and i went from 4 spots to 3 and the large one was half the size. now i did not work at this point only because it was the summer but if i did i would have done the treatment of CPT 11 on Fridays becasue i was bad, really bad for the first 2 days and then i was able to function a tad bit for the rest of the first week. then started to feel better. The last round i did after school started again so i left work early that day and went for my treatment.

I now had to heal from the chemo so surgery was scheduled for Nov 18, 2009 (plan Jan ned to stay out until the new year again) i was given 5 days and paid back all the days i owed so i can barrow more again. I went back to work 4th and started another regimin of chemo in the middle of january. Now i am working full time again. again always did chemo drip on fridays. I was doing CPT 11 again for 5 - 6 rounds. this time it was worse but i made it to work everyday again. I think i needed to go to work. It made the days go by faster and i did not think about what was going on and how crappy i felt. The only day i took off was a day in february. I changed my chemo to thursday because we were expecting a terrible snow storm and i was afraid wither i would not be able to get there or they would cancel. So i planned to take friday off but guess what the schools were closed because the storm was bad so i got lucky and did not lose a day. i finished the chemo drip at the end of april but continued xeloda until the middle of June.

I just had follow up scans in the middle of July and it was the first set of scan after chemo that was clear. I do scans again in Nov. (every 4 months for a while) It was a huge day when i got the news. We had a big party that sunday with all of my family. My aunt also got the all clear the same week (she has lung and breast cancer) It was great to be able to celebrate. I had a colonoscopy today and the Dr took 2 tiny pylops and said my colon look beautiful. so that is over until next summer.

listen everyone is different. My mother had cancer 3 seperate times. 1992 (tonsil cancer), 1997 colon, 2007 colon( unfortunitely she lost the fight the last time) but she worked every day except for the surgeries just like id did. we are the type of people who need to stay busy to make it through this kind of stuff. if you think you can work then work. Try it what is the worse case you can not it is ok. You then go on disability. if you can make it through and feel like it helps you make it through then do it. In my case if i was home i do not think i would have done as well and my spirits and attitude towards my cancer would not have been the same. Good luck in whatever you decide. I hope that helps

sorry this was so long.

[ams5796]

Wow, Debbie, that is an amazingly inspiring story. I've been trying to decide whether to go back to work in the schools in a couple of weeks. You make a good case for keeping busy.

Ann

[dschreffler]

Forget the guilt an do what you need to do to be healthy. Decide based on what is best for you.

My work was incredibly supportive for whatever I wanted to do. My Onc nurse suggest no work during the neoadjunctive chemo/radiation treat and she was right on. Given my job responsibilities - manager in large financial corp with huge, complicated, time critical projects, there was no room for part time or unpredictable schedule without me feeling frustrated that I'm letting my team done, so I did short term disability, returning 1 month after treatment ended. I'm so happy I did because the was n way I could have worked part time with daily radiation treatments and associated affects.

I worked for a month before surgery, took vacation time for 2 weeks prior to the knife, and then on disability for surgery/recover for a month. I went back to work for about a week, then chemo started again. I decided to take disability again with the support of my mgt. In fact, they were surprise I'd even consider working during my good weeks. Again, my job required a full 40-50 hour wrk week and a clear head. During the month was back at work, chemo brain impaired my ability to perform the job fully, and was frustrating for me to have to ask the same question 3 time so I could understand project status etc, or unable to say a word that I could see in my mind, but not able to spit out. Figured I'd not waste their or my time anymore and focus on treatment/healing.

I've used the time to work on projects I have deferred for years due to work, so not idle at all, but do my own choice of work on my schedule with no guilt. I do not miss the work stress, nor would it have helped me in the long run. With this round of chemo, low wbc/rbc's and delays in chemo schedule confirm I made the right choice for me. Supported by Onc and employer.

Now all that said, my financial situation allows me this luxury - thrifty, no kids, modest house with small mortgage, paid off decade old cars with 100k miles on, a decent short (13 weeks 100%/13weeks 80%) and long term(60%) disability plan, wife whom working part time and prefers to shop at kmart when she shops at all, and an emergency fund we had built over the years.

Best of luck in your decision. Your health and well being should come first, with no guilt!

[Terry]

I'm on social security. I could never work as an RN with my memory the way it is and also my lack of concentration. I also wouldn't be able to stand on my feet all day. I am running as a volunteer EMT but after my last call (ATV accident on the trail) I'm don't think I'm going to do that anymore either after I cover my shifts this weekend and if I do it will only be 4 hr ones. One call take 4 to 5+ hrs depending on what it is and I just don't have the energy if I have to walk a couple miles onto the ATV or snowmobile trail if we can't drive in. If it's a heart attack I'm not sure how long I could do compressions, we're an hour out from the nearest hospital. The meds we're allowed to give in the back of an ambulance are much less complicated than what I give as an RN so that's not a problem. They're basicly also dosed anyway (epi pens, etc.).

I'm sure it's a hard decision for you.