good news on gemzar & sobering questions

Pam P · 04-28-2009, 06:19 AM

I say my oncologist yesterday. I've been on gemzar now since mid-Feb. My ca2729 is down from 598 to 390!!! Yeah, the new treatment of gemzar/herceptin is working! I pray it continues to work for a LONG time.

I've been exploring the possibility of applying for medical disability. No easy answers. I talked about this with my onc. for the 1st time yesterday. I'm 57 and am weighing the choices of working till age 62 or 65 & retiring or disability. I made a statement about will I be alive at 65 to retire and his response was (I dont' remember his exact words) but don't count on it, not likely. Damn! There is it - reality of this damn disease. Not that I don't know that this is a terminal illness, I know the stats, etc, but I think I put myself in this false sense of safety that I'm going to survive. I've made it almost 8 years now, most of that time with bone mets, I've been pretty stable, feel well, mostly, although ups & downs of course caused I think more by chemo s/e than the cancer itself. I try to have a long view of life like planning for retirement. Is that normal, denial, or what? When I think of short term - being dead a year or two or more or less I go to panic mode so I go back into my shell and deny that. How do the rest of you with stage 4 deal with this?

About possible disability, this is what I know. My onc. said I would qualify with cancer & chemo & he'd be able to document that for me. According to my benefit package at work I'd have to fill out tons of paper work & wait to see if I qualify. Approval could take about 5 months. I would have to already be out from work while I'm waiting. (I quess working while waiting to be approved as unable to work isn't logical.) Once approved I would get about 2/3 of my current salary. The disability is reviewed each year. I would have this until retirement age. I don't know how I'd get by on only 2/3 of my salary - I don't live extravagently now & don't know what I'd cut. I sure don't want to have to move to a tiny box somewhere or give up other things especially if I wasn't working & had more time on my hands. I feel fine most of the time (except last winter when I had that long bout of infection etc) so I don't feel I'm unable to do my job, but I'm mostly sick of working full time & know I have an excuse/option to maybe not work.
So am I just trying to take advantage of the system? How sick to I need to be? I see some people on disability who are out running around doing what they like to do. Not that they dont have legitimate reason - just that they're not homebound etc. I enjoy much of my job, but some days think I could walk away & not miss it, but some days & hate dealing with it. Somedays I wonder how much I'd miss the people, the actual work. Would I be happy, bored, or what if I didn't have this job? It's not like I could try it out for a year & go back if I wanted. My job wouldn't be there for me to go back to & I can't risk not having the good insurance benefits I have now by giving up the job, then having to find work again - probably somewhere with no or little benefit in this day & economy and my age etc. Oh well, luckily I don't have to make any decisions right now and am feeling well enough that I don't have to because there's no other option. This is all just percolating around inside my brain and I wish I knew the best choice for me.

Becky · 04-28-2009, 06:58 AM

Dear Pam

Although you only get 2/3rds of your salary, it ends up being almost the same. For example, if you are single, you don't pay for medical/dental benefits anymore (they are generally paid for by your employer - check this out). Also, if you contribute to 401 K, profit sharing, savings bond plans or other company sponsored savings plans, this stops too. So, for most folks, between not paying for insurance (including life but you can continue to pay for this on your own so see if the company policy is portable - even the 1X your salary that you get for free) and the savings plans, it works out to very close to what you currently bring home. Definitely talk to someone in the know in your State to be sure.

P.S. - are you taking an aromatase inhibitor or Faslodex yet? Did you ask?

Love and hugs

Mary Anne in TX · 04-28-2009, 09:29 AM

Pam, you're amazing. I'm so very happy to hear that gemzar is doing the job for you. I hope it works and gets that # down to low, low figures! I'm cheering for ya! One step at a time....it will come together. Talk to lots of folks and get your answers. Prayers and love, ma

Pam P · 04-28-2009, 09:47 AM

Becky - Thanks for ypur thoughts, but I don't think in my case I'd come out equal financially. I'm single so I have no back income from spouse. I don't a medical insurance or retirement premium now, it's part of my work/benefit package so no savings there. I do pay into a IRA now that I could continue to do if I'm taking the long view of saving for retirement, or I could quit doing that if I need the monthly amount. I don't have big transporation or wardrobe expenses - I live 5 blocks from work & dress is casual. Other than less income = less taxes paid I really don't see any significant places I can save by not working.

WomanofSteel · 04-28-2009, 10:22 AM

Pam I went out on temporary disability, which carried me through till I received my first ss disability check. I think the amount I receive is actually more than I will get when I hit retirement age. It works out to about $400 a week. You are 10 years older than I am so maybe you may get more. If you go one the social security website I think they have a gizmo to help you figure out what your benefit may be. Good luck to you.

04-28-2009, 12:49 PM

You should check whether your disability payments are taxable. When I have received disability, it was not taxable, so I came out the same as if I worked. (Hopefully, your HR person could answer this question. I think it might depend on who pays for the disability insurance, you or the employer.) You might also want to look into whether you can work part time, and get partial disability.

Good luck!

Jill

Believe51 · 04-28-2009, 07:04 PM

Pam, I am so happy for you to hear that this treatment is working for you. In the beginning of Ed's journey I had done some research and at an appointment I asked about the Gemzar. Even though it was being used at times for bc my doctor said that with Ed's pathology we were going to try different drugs. I have watched for a long time since how this drug has helped other people. Look now, I am watching it work for you, yeahhh. I wish you continued success on this treatment.

And as for living with stage IV cancer, we just live day to day and appreciate every moment. While doing this it does at times feel like denial. In my heart I know it is not, we have accepted Ed's stage IV diagnosis. In a nutshell, we have accepted our lives and appreciate all moments we are allowed to enjoy. Knowing you for so long, I know you do too. I am sending my love to you and a smile I know you will appreciate.>>Believe51

Pam P · 04-29-2009, 03:12 AM

Believe51 - your beautiful words on living and enjoying and accepting life really touched me this morning. Thanks. Pam

chrisy · 04-29-2009, 10:03 AM

Pam,
I saw your post yesterday and your comments about how your oncologist responded to the question of "will I still be alive..." resonated with me...so much so that I had to shut down my window into Her2support.org.

First, I'm glad to hear you got GOOD news on your current therapy! We can all use more of that.

Living with stage IV is a real balancing act for me - teetering between hope, despair, a sobering knowledge of the "statistics" and a healthy state of denial - and back to hope. I really admire you for being able to think long term even while acknowledging the odds.

Still, nobody knows how much time they have. If you'd asked your oncologist back when you first had bone mets if you would still be alive TODAY, you might have gotten the same answer. I fully expected NOT to be here in 2009, yet here I am. And here you are. You just don't know. Nobody knows, it's just that we have reason to think about it.

We also have reason to think about it and then put it away. What if by some miracle we live for 26 more years but wasted it thinking about impending death? You are too much of a lover of life for that.

I think I would be best served by preparing for the worst then putting that aside and focusing on living. Not to say I have done that

Like you, I'm pretty much able to fully function. I have a job that I mostly love and which keeps me very busy. For me, the question of "should I go on disability and retire now...?" is more about what I want to be doing with my life and my time. My choice at the moment is to stay in my life as it is, although that could change.

Choosing to change my priorities and not work full time would also be a valid choice - especially if I needed that time to take care of me - body, mind or spirit.

Sometimes I feel like I should go on SSDI just because that's the only way I'll get my Social Security money - and I don't consider that taking advantage of the system at all. If you choose that route, think of it as a choice to take an early retirement.

You asked how people cope...so thanks for letting me cope out loud!

And SOOO glad about your good news!
Chris

Believe51 · 04-29-2009, 11:09 AM

Pam and Chrisy, thank you both for your pure heartfelt feelings about living with stage IV cancer. When such honesty and emotions go into such a post and it happens alot here at Her2, it allows me to be a better caregiver, more understanding, more ready for what is at hand. Thank you for helping me to be the best me I can be. Such love and honesty can only be shared by wonderful family and friends. I am crying tears of joy and realize every day Ed and I are on this journey we learn more. I have never learned so much from the human heart and soul as I have here! I love you all in your very own special way, always and forever>>Believe51

Joan M · 04-29-2009, 08:17 PM

Pam,

I appreciate your honesty and have had a lot of the same thoughts about work. I'm 55, divorced (for a long time) and working at a stressful job.

It seems you feel well enough to work as I do at this point. And you're doing really great so far at eight years out and the Gemzar working for you. Last week I read an article in the New York Times which said that 20% of women with advanced breast cancer don't live for five years (the article questioned in general whether we're winning the war on cancer).

That article got me thinking ... thinking that I have a false sense of security, as well.

My job is very stressful and I work long hours, and my commute each way is 90 minutes. So I've thought about collecting disability and believe I would qualify because of the advanced bc.

But then I worry about whether my current cancer docs would be covered under the insurance and how restrictive the insurance would be for treatments and procedures.

I'm not even sure how that works ... duhhh ... talk about being in denial.

Losing my medical insurance is my main concern, but having no salary would also be an issue. May 1 we're getting a temporary 10% pay cut due to the rough shape of the economy.

But my feelings vascillate. At the same time I'm afraid of losing my job, as three people were let go from my group a month ago.

Personally though I don't think I would miss work. I would not be bored and can think of a lot of things to do.

Joan

Lori R · 04-30-2009, 05:20 AM

Pam,
I too appreciate your honesty and surfacing this very real concern on our site.

For all of us Stage IV survivors.....I think living our life as if we have a future is very important to our continued health. The difficult balance is focusing on the NOW while yet keeping an eye on the future. But then...isn't that a challenge for anyone regardless of their health situation? So Pam....I vote to keep planning for the future but make sure that you don't sacrifice today's happiness.

I did want to share the results of some research I peformed regarding the various corporate benefits that might apply to you (and possibly others) The topics have been touched on but if someone can benefit...great!!
#1. Company life insurance
Some companies off 1 or 2 x your salary. Great but I don't plan on working until my last day here on earth. So...research your policy. In many (if not most) instances you can convert your policy even after quitting. You would have to pay a premium but it would supposedly be relatively small. This is good for 2 things. Extra insurance if you have a family but also it is a source of $ that you can get an advance on. My policy states that when the Drs believe I have 1 year left, I can get an automatic advance of $10,000. While I hate the 1 year part, it is comforting to know that I will have an opportunity to throw one heck of a party before checking out.
#2 Tax status of Disability Payments
I still need to try to figure out how my corporate disability would be tax free. My company currently pays for the benefit so it would be taxable. I've heard of people that have volunteered to pay directly, thus securing their payout as non-taxable. When I get that figured out I'll post. That would make a big difference.
The big wild card for me is not knowing anyone who has utilized corporate disability (I would get more than SSDI) As you work through the peaks and valleys of treatment, I am afraid of an insurance company that manages the disability, deciding I am no longer disabled. (YIPES....)
Joan...I too am in a very stressful job that I don't believe is good for my health. Yet, have a mortgage, a daughter headed for college. I just can't quite figure out how to live on 1/2 my income.
I am confident that we can get this figured out so we can enjoy our current lives while not sacrificing our future. (that we will have!!)
Lori

Shobha · 04-30-2009, 10:34 AM

Dear Pam, You are very brave and such an inspiration to me. I pray that God will work his miracle and find the right balance for you. May your life be filled with good health and joy.

hugs,
shobha

Pam P · 05-02-2009, 01:10 PM

I can't thank you enough for all the good wishes, support and words of similar thoughts & experiences and struggles (although I wish none us had to deal with them).

Thanks Joan, Lori, Chrissy and others on your own knowledge, research, and thinking on the disability issues relative to your jobs. I would like to do it to free myself up to spend my time more as I like, but need to get solid info on what my finances would be before I do anything. Also as Joan, you mentioned, what if I didn't qualify at some reviewal point then I'd be out the benefit, insurance coverage and a job. Very risky. I need to do more research and think this through carefully. I should be very glad - and I am - that I'm in a position of being able to choose to do this, and not forced to because I can't function. Weighing the odds and options is fogging my brain - hopefully answers and clarity will come in due time.