Working While Surviving Lung Cancer

[SandraL]

Good morning all. I am a workaholic, plain and simple. And was so thrilled to get back to work for 4 months after my first line treatment. I have had to back off again for the moment due to spine mets, pain and 2nd line treatment. But the SECOND I even start feeling a little bit better it is work that comes to mind, and when can I go back, even part time. Even now I have encouraged folks to call for advice and send me things to review, etc. But it is NOT even close to being there. And I have a senior, very stressful exec job...but I LOVE it. I also feel I have always been able to more than look after my family and kids quite well after work hours, but you had better believe I didn't stop moving when I got home either.

I have my own VERY LONG list of the reasons I think that work is such a huge pull for me and know that I am going to struggle with some choices in hopefully the near future. But I don't want to bias your responses in any way.

So I thought it would be good to share amongst others, who have chosen to work while surviving lung cancer, and your reasons for doing so.

Thanks in advance for sharing with us all.

Sandra

[Flyman35]

OMG!! Thanks for starting this thread. Tom and I were just talking about this last night in regards to a PM I received about putting the kibosh on working through treatment.

Tom has decided to stay working through treatment. I guess you could say that it ties into the whole quality of life issue. Tom needs a reason to get up in the morning. With all the aches and pains he goes through, without that he could just end up lying there and giving in and giving up.

Tom will most likely keep going until he can physically no longer walk.

There has to be a purpose to your life. He needs to feel useful and productive. If you just sit there and do nothing what kind of quality is that.

Denise

[Dave]

I have not worked since Feb. 07...thats when this whole adventure for me started for me.Have been on SSD since Aug. 07. While I am easily young enough to keep working my situation is somewhat different for others.I worked for a major hosp sys in my area and ironically one of my jobs was ...setting up and teaching lung cancer patients how to use home o2...how's that for a twist? So because of the time we were required to spend in the hosp. on a daily basis and all the possible exposure to other diseases...especially some of the nastier ones it was decided by all involved (wife,onc.surgeon and boss) to pull the plug. My cancer may not come back....or it maybe there when my scan in done on 06/24. Whatever the case I would chose raising and spending all the time I can with my 9yr old daughter everytime. Do I miss the work? You bet..and I was very good at it. Thats just my opinion and may not be worth a hill of beans...on the other hand it might....never know.

Dave

[SandraL]

Thanks Dave, all opinions are welcome here.

I should have also noted in my original question that I think we could all benefit (especially us workaholics) why others have made choices to leave work. So thanks for bringing that perspective.

[Dave]

Thanks Sandra......I also forgot to mention one other thing....I dont absoutely have to work...my spouse does pretty well...I'm lucky on that part...others have no choioce but to work.Trust me if you dont already know..SSD isn't the path to wealth and financial independance

[jaminkw]

Sandra: Talk about tough topics! I have been a workaholic all my life. Up until December 31, 2006, I ran my husband's office from home and then went to my office in town where I had a private counseling practice--saw patients, recorded my own notes and processed my own insurance claims. I decided to close my office rather suddenly, ostensibly to be free to travel with my husband for his business (he's semi-retired and made more money than I did). In retrospect, truth is that although on the outside I appeared very healthy and high energy, I was exhausted all the time. I was hospitalized the following September which signalled the beginning of my journey with cancer.

Severe chronic fatigue has been my most significant side effect from chemo--even now on the Avastin maintenance, I have rebound energy about one week just before going for the next treatment. I'm adjusting and don't think getting off the workaholic wheel has been bad for me but I'm looking for what I can do now. Like Tom, I'd like to have more of a purpose to the rest of my life. Certainly, I can understand Dave's response. If my grandson still lived here I'd be much more content spending time with him.

But listen to all of us--each situation is unique just as each of our responses to cancer and the treatments are unique. You're still young Sandra, and if you are still passionate about your work and can do it, go for it. Key I think is to asses your individual situation and make the necessary adjustment. One of the keys to longevity is flexibility.

Judy in Key West

[Larry's Wife]

Larry has been through 3 different kinds of cancer. He chose to work through all of them. Even with the lung cancer, he worked right up until he had his seizures in late January. He ran out of paid time and officially retired on May 1. Even at that, he still had about 20 hours of accumulated time that they paid him, which we weren't expecting.

He really misses work. He enjoyed his job, and I think it gave him purpose and something else to think about besides his health.

I'm pretty sure that he would choose to go back to work if he physically could.

[Ry]

I am not the survivor but I thought I'd mention how we handled the work issue. We have a wonderful family physician. When John was diagnosed he asked about going back to work and our doctor answered, "Only if you love what you do and it will make you happy-- will it make you happy?" John thought a minute and said no-- it wouldn't, and he never went back to work. We were lucky that he had disability insurance through his employer and that in addition to the SSD was enough to not make a huge dent in our financial situation.

Once we got into treatments John often said fighting cancer was a full time job.

Rochelle

[Larry's Wife]

Rochelle, I think your doctor hit the nail on the head. How astute of him to ask if it would make John happy. Whatever it is that makes the survivor happy is therapeutic.

[ursol]

Sandra,

Great topic..I am a workaholic and am not ashamed of it. Sometimes my oncologist thinks I'm crazy to keep working but as long as I can still physically do it I prefer to work full time than take a pay cut with LTD and SSD. It's not just the money, I love the challenge. My company really promotes professional development and allows us to take on projects outside the scope of our jobs. Currently I'm getting involved in our international business because I felt like learning something new and now they are sending me to Brazil. I also think that my mother does a better job at raising kids than I do so I like that she babysits my baby girl every day.

I do realize that in this journey there will come a time when I absolutely cannot work and I'll cross that bridge when I get there but for the meantime I'm loving what I do. My older kids also think I have a cool job and would really be disappointed if I left it.

Lilly

[dadstimeon]

Hi Sandra,

I worked (12hr shifts / 60+ hours a week) as long as I could after I was diagnosed with lung cancer and I wish I still were able to work. I feel it would not be fair to my family (nor would it be right) for me to stay home if I'm able to go to work. I’m on SSD and have lost 40% of my income. We live in one of the most expensive states, live a modest life and being on SSD has taken a huge financial toll on us. Also it's not just about the money. I enjoyed my (IT Field) job (even went back to school for 6 months at night to better myself for my family) and I think it benefits someone to be productive, gives one a feeling of self worth and meaning. Still had plenty of time for my family and we did lots of things together. Bottom line-- if you want to work, enjoy what you do and as long as you can perform your (the same way you did before you were diagnosed) tasks etc without it taking it’s toll on your health then do it. My experience with lung cancer is it’s all about making adjustments, being open minded about things as one goes along and being ourselves. Do what you think is best for you and your family. Good Luck!

Rich

[dannnie]

I had to quit working in Sept. 07 . I was on FMLA at my factory and it ran out so they recommended that I start SSD or I would get fired for missing. I felt that if I ever quit that the cancer has won but being off has put a different light on things. Eventhough I miss everybody there because they gave me such huge support I love knowing what time I have left ( 50 yrs I hope) is with my family and doing what I want to do. In my mind I'm still in control not the cancer. That probably sounds crazy but it gets me through the day.

Dannie

[Janet B]

Tuesday was my last day.

At 49 I am officially retired. It was a very hard decision and many many people had an opinion on it. I took some long quiet time just me and God and thought it through and as soon as I made the decision I felt happier and healthier and stronger. My job as a preschool teacher is exhausting, demanding, required many hours of work after school of planning and conferencing and involved being surrounded by germs and sickness daily. I came home from work and literally crashed onto the couch each day. There was the thought that I was giving in to the cancer, and that I would be bored silly and that I would have nothing to do but think about it - but I went with the - Now I will have the time and energy to focus on myself and my health, I will have time to visit with family and friends, I will have time to write those stories and organize those photos and fiinish decorating the house and work on my hobbies. And, as a preschool teacher in a very small school - I am welcome back any time to read and play and visit. So this - I pray - was the right answer for me.

I have been smiling since Tuesday.

Peace - Janet

[AnneM]

I have not been back to work since diagnosis. I could not physically do it with my back pain. I had been planning on returning to work, but I decided about a month ago to call it quits. I figured I could manage maybe 4 hours a day, but it would be exhausting for my back and I worried what amount of energy I would have left for my kids. My kids are young, I still have one toddler, and I am cherishing every moment I get to be with them. I must admit, I have never been a workaholic and I am enjoying my leisure time (although I don't have much with a 2 year old running around)

[Yorktown Linda]

Sandra,

I am most definetly not a workaholic. In fact, I've always been known as the lazy one in the family -- not fair, I'm just laid back.

When I was 16 I thought that the best thing I could do was break my leg. Then I'd be able to lie in bed all day and read and no one would pick on me. But when I was pregnant with my first, I had toxemia and was put on bed rest. I couldn't do it. I walked the dog, went down to the pool, etc. I was not employed at the time.

My most recent surgery was April 28th. I fully expected to be back at work by now but a bad reaction to chemo has me still at home. I miss work terribly! A lot of that is due to missing the people. It's lonely here. But I also love my work -- I'm a librarian in a public library 35 miles north of NYC.

I have talked my boss into letting me do some of the work at home -- reviewing and ordering books for the library. When I go back, I'll probably take it slow and work part-time at first but I can't wait till I feel up to it.

[jaminkw]

Reading these posts, I've noticed two important factors that pop up with people who are still working or want to get back to work. They love what they do AND in many cases, they miss the people. I loved counseling but over ten years time found it to be very isolating. The only people I interacted with were clients and you're not supposed to have personal relationships with clients.

So for those of you who've expressed being lonely at home, I'm with you but I got pretty lonely at work too. I have my husband here but one person can't be all things to you. Thank goodness for the wonderful friends I'm making on this site.

Judy in Key West

[SandraL]

Thanks everyone for sharing your thoughts here and please continue to do so. It helps us all. For me it comes down to "passion" (no, not the love kind....read on)...

Working or not, it is about doing things that you are passionate about. I love my job and I love working and interacting with all kinds of people. And I really love joy and humor and there is tons of that at work...because I make sure of it!

I read early on in my journey with cancer that you should continue to choose to do what you are passionate about, or find something you are passionate about...and skip the rest. Because it is when you are truly passionate about something, that you can divert your whole mind to that activity...and forget about other things...like having cancer...if even just for a short time.

We all have different choices to make at different times during this journey, and need to weigh them up for ourselves. Hopefully our "musings" here help us all in making the best decisions for us.

Happy Friday everybody...hope everyone finds some "passion" this weekend!

Sandra

[eYuppie]

I associated going back to work with getting my old life back.

So, I was eager to go back to work full tilt before my oncologist thought was wise. Before I knew it, I was working long hours again, and coming straight home after work for a quick dinner and early bedtime.

The truth of the matter is that we don't get our old life back. As survivors, we live in a new awareness of how precious each day happens to be. Almost immediately upon diagnosis, I realized how much clutter there was in my life. I got rid of as much of it as I could, said no to things I should have said no to long ago, and focused on living a life that is meaningful, holy, warm, loving, funny, and interesting. I was happiest while I was still living fully in the awareness of these things, but I still wanted to get the old life back, at least to the extent that work was concerned.

I also needed to go back to work. As a divorced father of two boys -- one in private school, the other in college -- I could not fully provide for them on a 60 percent disability check. I also couldn't afford for the paid health insurance coverage and benefits at the office to run out.

I met people during chemotherapy that lost their jobs during treatment, and I didn't know how confident to be in my ability to choose the time of my return.

I'm back to the long hours, unfortunately, and I feel like the company (under the guise of hiring me some help) is really asking me to train my replacement. I won't have much choice, as I'm not sure that 55 year old Stage IV nsclc survivors (with metastatic brain surgery) are easily hireable elsewhere.

So, I'm learning the hard way to keep the job in perspective -- as a means for providing for the family, and maintaining health insurance for me. I have more heart for the company than it has for me. I find myself repeating to myself over and over again -- work to live, but don't live to work.

When my wheels do fall off, I won't be wishing that I put in more time at the office.

[SandraL]

Thanks for your thoughts eYuppie and welcome to this site. Some of your work thoughts definitely ring true for me. The ones about getting your normal life back and not wishing you had worked harder.

We look forward to getting to know you better. Feel free to post your medical history in your profile. You add it in as your signature.

Sandra

[sunnyside]

I have remained at work nonstop since diagnosis and through chemotherapy. I am the financial support of my family and have children still to educate. I do love my job (I am a physician) and the people I work with and I work in a specialty that doesn't give me much exposure to sick people! My employer has been very supportive and I get flexible scheduling and administrative time to cover the periods when I'm not feeling very well. I figure I could be home feeling like crap or be at work feeling like crap and at least diverted by other people's problems. I am not a workaholic and never work more than 40 hours a week but I find taking care of people, intellectual challenge and the reward of providing for my family to be very therapeutic for me.

[jaminkw]

I feel really guilty when I read about people doing chemo and continuing to work. I know I couldn't have when I was doing the big chemo cocktails. Even now, my energy level is so low sometimes--like today at 1 pm-- I didn't know how I'd make it from one end of the grocery store to the other. I don't think it's all age, I'm 64 going on 65, and otherwise don't feel old. I always manage to rise to the occasion cause I'm a can do kind of person, but commiting to an 8 to 5, don't think I could do that.

Judy in Key West

[SandraL]

Well Judy, don't feel too quilty! I am still working a bit right now. And I can tell you for free that working simply is sometimes not the best thing for me to be doing for myself. Sometimes it is just plain stupid. However, it would be out of character for me not to take too long in learning an important lesson.

Sandra

ps I am home today suffering from chemo ill affects (and beside it is Saturday so can't go to work!) so when I am alert enough I am posting...

[Dave]

Its a very tough decision to make...hope we all got it right.

[dfourer]

A year before diagnosis, I had a job I rather hated, with good income, good insurance, and good dissability insurance. I quit that and tried self-employment. It takes a while to make a "career change," and I was not sure how things would work out.

In less than a year, I got sick from cancer and eventually was diagnosed stage 4. I took Social Security Dissability Income and spent some savings. Money was not really an issue, as my living expenses were modest. It was over a year before I was getting better and seriously thougth about working again.

I realized that I was very seriously happy that I was not looking forward to going back to a job I hated. I would have been in a bind. I would want to be healthy, to exercise and live an active life, but want to avoid that job. Such a delemma could have kept me sick and eventually put me in my grave.

I tried to get various simple, part-time jobs, and I'm very glad I didn't get hired. I went back to making my own business and working self-employed. I do landscaping and also home repairs. I bought an old truck and started looking for clients. I get much satisfaction from the work. In three years I've built up a business in the neighborhood and made friends. Who knew I would stay healthy this long? I don't get bored sitting at home. I work outdoors and get good exercise. I can take time off for treatments or illness as needed. I can take vacation and do the things that are important to me, because life is short.

I report my income, pay taxes, and stopped getting Social Security payments, but the federal and state medical benefits are wonderful. I go to the best cancer center and never see a bill. Another benefit--because I chose to work, Medicare and Medicaid love me and take good care of me.

That's my work story.

David

P.S. I would really like a stimulating, enjoyable, vacation. I took the time off but had no where to go this time. I've traveled in the past.

[jaminkw]

David,

I know this is getting off topic but I wanted to let you know that your post was the first I read this morning, and sometimes we get exactly what we need when we need it.

First of all congratulations on being a long term survivor. I'm 64 and don't plan on returning to work for pay but my greatest love is working outdoors in my yard and doing small household repairs/improvements. I have been avoiding it because I'm afraid. I was seriously overdoing that kind of work when I wound up with my pleural effusion and cancer dx. Don't get me wrong, I don't think that gave me cancer but I know from my study of this disease that stress and overwork can contribute to the manifestation if the disease is lurking. I'm going to start today--a little at a time. That's my fear, that once I start (because I love doing it) I won't stop before overdo!

David, you are an inspiration to me that not only can I begin to do the things I love again but also do it while continuing on treatment. I have just begun to entertain the thought that I'm too scared to go off treatment even though I'm in remission. I've talked with my husband about staying on Avastin but stretching the intervals out to four or six. Let me end by saying you sound like someone who has succeeded in finding a balance in life that fosters healthy living. My goal exactly!

Judy in Key West