Monday, April 19, 2010

I've never even BEEN to Maryland

I've been plagued the past week or so by questions from my long-term disability company (through my work, not SSDI) regarding my continued disability. Seems their goal, over compassion, is to find a reason NOT to pay the disability any longer.

It started with a phone call follow-up last week to see how I was doing.

"Well, I still have cancer", I said.

A friend later suggested I might have told them that I am still dying from cancer. He wondered whether they were checking to see if perhaps a miraculous event had occurred, that perhaps I'd washed in the pool of Bethesda or something.

The call was followed up with paperwork for my doctor to fill out. A nurse called to check with me on the questions regarding how long I can sit, what I can lift, if I can reach, drive. The doctor assured me the other day that he'd do what he needed to do to show them I shouldn't even try to work.

I can't do my job. I couldn't do it right now even if I only had to work alone with no one else around. There's no way I could do it with the added pressure and stress of bosses, co-workers and clients. I'll never get back to where I was before my diagnosis and hospitalization. Not physically, not mentally or emotionally, not in my ability to cope. OK, those abilities were questionable already, but 8 months of treatments and fatigue and pain haven't improved those.

If this portion of my disability decided I was fit to work, I'd have to just lose their support. Apparently they'll torture me with these questions every six months, and then at the 2 yr mark, will evaluate whether I am able to do ANY job.

Maybe the 'cure' will be found by then. Yes, of course that was sarcastic. I won't hold my breath. I know they're doing their jobs, but maybe they could have a flag on certain files, to Google the condition first, to see if the prognosis is still, well, death, before placing regular guilt trips on the patient about being disabled and facing just such a prognosis.

Yes, there is the possibility of living for years with metastatic cancer to the bones. That doesn't, however, mean years of easy living. There is really no "improvement" or "rehab". The longer you live with this, the worse the treatments get, and the more damage the disease does without killing you. Hip replacements, spinal fractures, chemo, radiation, and eventually; spread. Spread meaning worse treatments, worse chemo, more radiation.

I'm still on the first tier of treatment attempts. I started Zometa last week, to shore up my bone strength and try to prevent fractures. Side effects? Fever, chills, and more bone pain. It's been a week since the first infusion, and I still feel worse than I did before the treatment. So far, my Femara seems to be holding up. I don't have to change yet.

There are only so many out there to go through. This should be good news. It doesn't feel as good when the Disability Insurance company starts the questioning.

Thanks a lot, guys, for sending me into the depression corner again.


Bethanee said...

Damn people! If I could shake some sense into them I would!! I love you sis!!!!

by...K@ Ashcroft said...

Perhaps this is the reason for the change in sleep patterns lately.

Anonymous said...

I sit here looking for something sympathetic, clever or otherwise to say. I find myself staring at my monitor. I, myself, have been undergoing testing for breast cancer. I know what that feeling is that you feel. The questioning, have I done enough in life for myself, for my children. The not wanting to leave them behind. Cancer is a terrible disease that needs to be cured. God be with you.

marnee said...

I'm back-reading, thus the comment on a post over a year old (are we really that far into 2011?!).

I have two kids with Autism/BiPolar, so while the cancer info is relatively new to me, the insurance joy/misery is not. So your suggestion on the insurance rep's 'googling the condition to check the prognosis' resonnated with me, Big Time.
Your wording of it was absolutely perfect. That absolutely overwhelming frustration with the never ending papertrail that yielded iffy results at best (causing you to consider the whole experience an exercise in beating your head against a brick wall).

It has been my experience that often, only someone else's words to describe my most frustrating things, can adequately tell what I feel. Otherwise, I just find myself mute on the whole subject.

THANKS for writing . . . All of it . . . the good, bad, and ugly. And the other stuff too.