I've been surprised by the number of people who have asked me why I'm still working fulltime. My co-workers asked me, when I returned to my job following surgery, when I was going to retire. Friends, and some family members, have asked.
I guess many people hear "cancer" and think dire consequences for the person afflicted. Or perhaps they've known people who were incapacitated by their disease, or they've seen a lot of movies where the cancer patient spends all her time in bed or in the hospital.
I wanted to go back to my job four weeks after surgery, but my surgeon wouldn't sign the work release. He said six weeks minimum.
I worked all through chemotherapy, and through radiation therapy. I missed just one and a half days of work due to feeling ill.
My job schedule was instrumental in my continuing to work. I work 10-hour shifts, four days a week, Sunday through Wednesday, and I start at 12:30pm.
I had chemotherapy on Thursdays. That gave me Friday and Saturday to rest and recover before going back to work. Radiation was late morning, Monday through Friday. Chemo and radiation were both done at the medical campus a mile from home, so I didn't have to spend time driving, as a friend in Texas did. Her home was 30 miles from the radiation center. Drive there, 45 minutes. 15 minutes for treatment. Drive back, 45 minutes. She had someone fill in for her at work during those 2 hours.
I know I'm very fortunate that I tolerated treatments much better than some others. I didn't have the nausea during chemo or the extreme fatigue during radiation that I've heard others talk about.
My type of cancer puts me on the fast track to disability with the Social Security Administration, through their Compassionate Allowance program. Compassionate Allowance program.
"Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards."
Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly."
I was shocked and disbelieving when I stumbled upon their list and discovered my disease on it. It drove home how serious my situation was. I still have trouble looking at it and seeing UES (they call it high grade ESS, endometrial stromal sarcoma) on it. Compassionate Allowance List.
Their reasoning for including undifferentiated endometrial sarcoma is this:
"The prognosis for ESS is poor as it is a high grade malignancy that grows and metastasizes quickly. By the time this sarcoma is diagnosed, it has often spread outside of the uterus. Once treated, it also has a high propensity for recurrence."
When I read this, and connect it with all the cautions my oncologists have been telling me from day one, it doesn't seem possible that this is what I have.
And it makes me wonder - should I go on disability? Am I just fooling myself that the cancer is all behind me and I can just go on with life, tra la la?
My gynecological oncologist, who did the surgery, has asked me several times, "Are you still working?" He suggested last fall that I go on disability. That was before I went through chemo and radiation. Before my CT scans came back clear. He said if my scans after chemo showed the spread of cancer, then there was probably nothing more they could do except put me on palliative care.
I think he was being realistic back then, since the odds are not good and my cancer surgery had been quite extensive and difficult. Perhaps he didn't think the scans would be clear, and that's why he thought I should look into disability.
But I'm still here going strong, pretty much back to normal with a few lingering side effects.
My fear is that I will keep working, working, working - and then one day, the CT scans will come back bad, and I'll be told "Six months, maybe less" - and I will have wasted the last year or two of my life at a crummy job, when I could have been doing things that really matter.
Such as making photo albums for the kids with pictures of their childhoods, visiting family and friends, traveling to places I've always wanted to see (Scotland, I've got my eye on you) -
A major stumbling block is that health insurance for both me and my husband is through my job, and it's really good. Much better benefits at a much lower cost than I could get otherwise.
My life insurance is through my job too - and I'll never qualify for private life insurance again.
Quitting my job would mean going on COBRA - and that would put a real damper on our already tenuous financial situation.
It's less stressful for me to just deny, deny, deny the terrible possibilities, and keep on with my daily life, just as before I became ill.
And maybe I'll be part of the lucky 43% that make it to five years survival, perhaps even of the lucky 20% that make it to seven years.
I have nine years before I qualify for Medicare based on age. After two years on Social Security disability, Medicare would take me, but what about those two years? How would I pay for healthcare until then?
It's a complication of the USA healthcare system. I've been employed since I was 16. I've never been a free-loader; I've been a productive citizen. And yet, now that I've been stricken with a dreaded disease, I have to worry about being able to pay for medical care, at the time I need it most. That is wrong.
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