Episode 12 - A Day in the Life with Metastatic Breast Cancer

Well, it has been a minute, but I am back. I must confess, I have been ducking this one for weeks, and have only just figured out why this, particular installment should be so difficult for me to write, and share. Shame. Just pure and simple shame. Why? Because the topic is the financial impact I, and many other women, are facing due to this lovely disease. But, why the shame? Ah, why, indeed.

At this stage of life, I really “should” be in better shape, economically. I should have a lovely nest egg, savings, stock, a house — you know — all the trappings of a responsible woman facing her retirement. And yet, I do not. Hence the shame. So! I will try here now to get out of my own humiliation cycle, get past that rather limiting, and certainly painful condition of shame to discuss how dealing with metastatic breast cancer affects what Virginia Woolf referred to as the “grubby pounds and pence” of every day living. Because it does.

Unlike my surviver sisters with curable breast cancer, I have not experienced the now horribly familiar pattern and routine of scans, disease detection, treatment for a few ghastly months with radiation, and sometimes chemotherapy, and then recovery. My GOD, in recent years breast cancer in women of all ages has just sky rocketed. None of this is nice, and my friends and relations who have gone through it deserve all the kudos for dealing with that. But get through it they have, and now have their lives, careers, and financial health back. Their road was grim, but blessedly temporary. With metastatic breast cancer, treatment doesn’t end. The patient must rely upon the harsh drugs, and frequent, time devouring examinations, and scans (Mammograms, CT, MRI, and full body nuclear tests) until death. And you know what? That makes holding down a job difficult for some, impossible for others.

In past episodes I have discussed the side effects of the treatments at some length, so won’t belabor that aspect, but I will state that, for me, continuing a job I enjoyed, and the financial security it afforded me, was simply not possible. Within just a few months of starting treatment, I was forced to quit. I have read of some women with my diagnosis, and treatment regimen running marathons, and starting successful businesses, and slaying dragons, but I suspect they are the rare ones. Most of us are just too fatigued, and ill to work full time. And so, figuring out how to afford to live becomes yet another trial one faces on an every day basis. And the learning curve for figuring it out is steep. I hope what I have learned will be of help here.

I was fortunate in having a compassionate boss at my last place of employment, who, when learning of my diagnosis, made me aware of the disability insurance carried by the company. Our company accountant also helped me apply for the 12 weeks of financial aid provided by our state for people in my situation. He also put me into contact with a lawyer who helped me navigate the treacherous waters of having to prove to the insurance company I was deserving of their financial support. Lastly, I had to apply to Social Security several times before they, too, deemed me worthy of a disability status. It wasn’t fun, and was an emotional strain I could ill afford at the time, but fighting for it was worth it. The combination of Social Security, and the disability payments has not covered everything, but, with the generous support of my family, has been enough for me to stay in my apartment, and keep fed. Not having to work has allowed me the luxury (and that is what it is in this country — a luxury) of spending my time taking care of myself, managing the stress which only exacerbates the condition, getting to, and from a myriad of clinic visits, and resting. Fatigue is a beast requiring much rest. Sadly, the disability insurance (at least for me) does not last more than a few years. As I am still here (the system expects us to pop off, I guess), I must figure out another source of income to carry me through till I do pop off. 

So! This is where I am now. Over the last three years, having exhausted what little savings I had, I am soon to be faced with managing life subsisting on just the Social Security benefits alone. Now things get really tricky. I will need to be a smart girl, and take advantage of the low income housing prospects available to me, as well as finding some part time work that I can still do. Also tricky, but I think I can figure that out, too. Fortunately, I have only myself, and my silly cat to worry about. My adult son is doing fine, and not only does not need my help, he no longer even needs me to be in the same state, so I can relocate anywhere! Some days, having this feeling of disconnection is daunting. Some days, it is remarkably liberating. Today I feel a bit like a dandelion fluff — one good blow, so to speak, and I could wind up anywhere! And so, my lovelies listening, and reading, I am starting another adventure. I will keep you posted as to where life takes me next, and what I learn. See you next time.