Working after Lobectomy/Chemotherapy

[pewjumper]

Mom has really struggled recently with a decision to be on Social Security (she was awarded it due to another health problem unrelated to the cancer).

She made the decision last week to accept the Social Security, and to leave work.

Yesterday, she got another letter in the mail saying effective immediately her Social Security claim has been denied.

I know several of these topics are addressed in various places on the forum, but I wanted to get some opinions here that could help us make a decision.

I know that SS usually awards automatically for stage 4. What about earlier stages?

Second - long term, how much better will Mom's breathing become due to the lobectomy. It has been since Nov. 06. Is this as good as it gets? She has trouble with being out of breath after walking short distances and doing small tasks. This is a big problem for her, as she is an RN and walking halls/seeing patients is out of the question right now. Will her breathing get any better?

Third - she has memory issues (chemo brain) and some blurred vision, presumably also from chemo (We have no reason to think that it's from a brain met.) How long do these symptoms last? And how severe are they?

I guess generally, I'm asking from you survivors -will these effects get better enough for her to work? Or should she pursue a Social Security claim based on her lung cancer?

[crystleshoe]

I am sorry I dont have any answers for you, But I have been thinking of you and hoping you are still smoke free. I am sure that someone here will be able to give you some insight

[Debi]

I wish I could help you also, but just don't know. The one thing I have heard is that Social Security usually denies you the first time around, and you have to try again. That said, I'm not sure what stage lung cancer would qualify for SS benefits, or if there has to be additonal health problems (as if lung cancer isn't enough!).

Hang tight, I'm sure someone will be around that can answer your question!

[Ry]

John did not have any problem getting SS benefits, but our doctor filled out all the paper work saying he could not work-- and that his prognosis was terminal. I think it mainly depends on how her doctor or doctors-- as they check with all of them-- fill out the forms. There are attorneys that can help her with the denial or she can start and again-- there must be an appeal procedure.

[beatlemike]

Hi pew,I had to wait about 10 months before I was approved for ss disability. The place I worked at tho had a company do all the paperwork for me. I have heard also that sometimes it takes 2 or 3 times before you get approved but I dont know what they think you are supposed to live on in the meantime. Even after you are approved it takes 2 years before you are elgible for medicare. Sometimes its better to hire a person or lawyer who specializes in it. I wish you and your Mom all the best.(PRAYERS)

[Judy-OK]

From what I have heard it varies greatly from state to state as to the degree of difficulty in getting approved for Social Security Disability. Myself and two friends of mine were approved on our first attempt without being sent to one of their doctors for a check up. My cancer was deemed inoperable, one friend has lung cancer as well and it was removed surgically and the other friend had breast cancer and got a mastectomy. Someone who posted ahead of me mentioned the "filling out" of the forms by both your mother and her doctors. I truly believe that this is of utmost importance that it be very thorough and specific. Best of luck to you mom.

[pewjumper]

But did any of you who've had a thoractomy continue working? If so, how'd that go and what changed?

[Andrea]

I have heard that a lot has to do with how the doctors fill out the forms also. You may want to hire a lawfirm that specializes in helping you get disability claims. I am not endorsing them as I have personally never used them, but just as an example to look at the website, I have heard of poeple using Binder & Binder :

http://www.binderandbinder.com/

[Debi]

Well, I'm not sure if your mom had her entire lung removed? I didn't have chemo but I had my upper and middle lobe removed and am still working - I put in about 60-70 hours a week. Actually, nothing changed for me and everything changed for me.

IN the beginning I got fatigued easily and it took me awhile to build myself up. I would get tired, and would start walking lop-sided with my arm bent against my chest, to favor the side that ached. This went on for actually the first year. People at work would notice it and point it out - I didn't even realize it, I was walking like Quasimodo. I would run out of breath, but the more I went to work, the easier it got. And work around peak times for me was 7 days a week, 12 hours a day, most of the time running around like a chicken. My doctor told me that he could give me a note to restrict my hours to 45 a week but I didn't want to leave my peers short-handed. I managed to live through the busy time but I can tell you, I knew I had had surgery, particularly that first year.

AS far as today, I still get winded going upstairs- I can walk regular distances but put me on an incline and I'm finished!! When I give presentations or talk in front of a room full of people, I start getting breathless after about 15 minutes or so. I'm sure this is because when I speak in front of people, I have a different way of speaking, where I have to project my voice. Also, when it gets real busy I'm supposed to wear this rock star headset while I'm walking around that I hate anyway and its a challenge to talk while running around the place at the same time. So I don't wear it (boo hoo).

You ask how it has gone - my career has flourished these last few years. The minor inconveniences that I have experienced due to my surgery are well worth the rewards that I have gotten. I am lucky.

[Andrea]

To answer another of your questions, the shortness of breath depends on the person I think. My mom still has some. It turns out she has fibrosis from radiation damage. The drs say it happens to some people, not all. So I think it is a case-by-case thing. My mom's fogginess from chemo has pretty much gone away.

A question to ask is how much your mom enjoys her job and whether she wants to work. If she enjoys it then go for it and see. If she doesn't, then try to pursue social security also. There is somethng to be said for the mental stress impact too.

[chloesmom]

I think the results are different for everyone. I was back at work about 2.5 weeks after surgery. Not moving around a lot and not real well, but more and more improvement every day.

I wanted my 'old' life back so badly, I just pushed and pushed until I was back to the strength I had before surgery, and since I wasn't smoking anymore coughing fits were a thing of the past, so I actually eventually started to feel better than before surgery.

But,I was lucky. Some people suffer a great deal more with shortness of breath, pain, and other issues brought on by chemo and radiation.

I know where I work, if necessary, I could have gone on convalescent duty, where I come to work and do things while I recovered (paperework and other non-physical assignments), but not in a full-duty capacity. Some places call it "light duty." Maybe she could do something like that for a while and see how it goes.

Everyone recovers from this kind of trauma in their own time, and with varying degrees of success. I hope your mom eventually turns out to be one of the lucky ones.

Cindy

[Welthy]

Blurred vision is very common with chemotherapy and we were told not to get Tony new glasses as it would clear up when he was done with treatment. It is the worst for about a week after chemo and affects his ability to see words on the television.

It does go away though and your Mom's clarity of sight will be back.

[onlyone]

My mom was a retired teacher when she had her lobectomy (Oct. 06) but has started talking about finding some volunteer work to do now. She still gets shortness of breath but goes to breathing classes and exercise class. She was discouraged for the first 3 months but then started noticing improvement. From what I found in studies on the internet, that is the classic recovery in terms of breathing ability after lobectomy. From what I know about soc. sec., the first denial is not unusual and many decisions get reversed on appeal. From what I know about nursing, it is a profession in demand and I would think with your mom's experience, she might be able to find some type of work she could perform with her limitations, but I don't know how that would affect her eligibility for soc. sec. I know once you're on, they permit you to go back to work on a trial basis to see if you can do it without losing your benefits. A lawyer who specializes in soc. sec. would probably be the best person to consult.

[pewjumper]

Hi Everyone,

I am Kathy, Mitchell's mom. I have such a wonderful son! He is my inspiration to keep going so many times. I love him dearly.

My social security is approved and I will be working, paperwork, 1 day a week at my job. Not real sure yet how this will work but we will see. I may have made the wrong decision as I don't do well staying home---get depressed and have a lot of time to think about this diagnosis---which I do not do well with.

MY physical problem is my Shortness of breath and lack of energy--I just plain have trouble moving! I have gained 36 pounds since the surgery ( and stopping smoking). The doctor says to not diet yet---but I am almost immobile---or so it seems to me! lol

I just want to be normal again. I just want to live and laugh and continue on. This diagnosis hurts my soul !I am afraid to count on next month afraid I will not see it...But I am blessed to be where I am. I know that I am a blessed person. Everything has went well there are no signs of cancer right now. I just feel like a freak----very little hair, a huge body, big feet! lol No kidding. I want to be "me" again. I just don't know where to start...Thanks so much for listening. Big Hugs to each of you! Kathy

[trish2418]

Hi Kathy, and welcome. How wonderful to see you post. All of the doubts and insecurities you expressed are, I think, common to all of us when we finish treatment.

I never had surgery, so I can't comment on those side effects, but I can say that hair grows back (mine did!), you'll get stronger and stronger every day, and you'll begin to feel ready to take back your life again.

Be kind to yourself, you deserve it.

Trish

By the way, we all adore your son -- you've done a great job with him.

[Debi]

HI Kathy, glad to see you post!!!

I gained weight after my surgery too, and the quitting smoking didn't help either so I know how you feel.

Hang in there, things get better. Took me a full year before I started feeling more like myself physically and even longer before I was able to forget the fear for any amount of time. But now, for most days, I do okay.

[Connie B]

Hi Kathy,

Good to see you post. It's all about those baby steps that we take that help us to move forward. You just took one by posting.

Your still at the very early stages of your journey.

How well I remember feeling just like you do right now. Only in my case I was just sitting around waiting to die! I want to encourage you to not do that. I wasted 2 years just sitting around and being depressed. ISH!!! That was a very long 2 years for me and for my family!

One day I got out of bed and said to myself: "Holy Cow Connie, your going to live, so you better get busy doing that" I picked myself up and did a 180 turn around and well as they say, The rest is history.

You need to push a little harder right now when it comes to doing things. Or you need someone to give you a nudge to get you going. I know I did.

It's not easy, but its a hell of a lot better then sitting and stewing over death and dying. Your here today, and your cancer free, and your able to make changes, Go for it! Don't let this beat you into the ground. Life really is tooooo short, Nurture yourself and let others as well. Do something that makes you feel good, even if it's for 20 minutes a day, do it. I can't tell you how much that helped me.

The weight will come off if you want it to. You just have to work at it at a different angle is all. I know I'm not telling you anything you don't already know. I'm just trying to give you that little nudge I was talking about. I went from 144 to 172 so I know all to well about the dreaded weight gain issue! And for me, that only added to my SOB.

I had my left lung taken out 12 years ago, and I had SOB for about 2 years, and the reason I had that SOB is because I didn't DO ANYTHING! I got lazy and being I was busy dying I didn't think I had to do anything. Boy was I wrong! I got a treadmill and I used it and I started taking walks. I had to build up my lung capacity and it wasn't getting done just sitting around having my pitty party and waiting to die. My Stats to this day are 96. I have SOB again, but it's not lung related. Now I have heart problems too. But again, that's not stopping me from living each day to the fulliest. The SOB will get better, but don't let it pull you down. I still go on with life as if I didn't have SOB, I just do things a little slower.

Please know all your dealing with is very normal, but it's also very changeable. It might be helpful to join a Cancer Support Group. Even if it's all cancers. People in the same boat seem to understand us the best and I'm a firm believer in experience is the best teacher.

I hope you'll stay with us and post more often. As my LC buddies and I always say, if we fall in the hole, would you please throw me a rope and help me out?" I'm throwing you that rope. There is light at the end of this tunnel, HONEST!

((((((((((((((((((((((KATHY))))))))))))))))))