The Road to Ruin

I have been blessed with relatively good health all of my life.   I did go some years without health insurance as a professional student, but I came through that okay.  The closest I came to chronic disease was reading about it.  I read about people losing their homes and jobs as a result of the disease.  It was horrible and I always voted for and supported any and all attempts for single-payer health care in the United States.

When I was told that I had metastatic breast cancer, the only things I thought about were keeping and losing my life, the next doctor’s appointment, when the next prescription needed to be filled, and–when it got bad–when the pain would go away.  All through the year I shelled out my co-pays, money for the bus or taxis, and kept telling myself that it would be okay.

CaptureSo now, after a year of shelling out thousands of dollars in co-pays and transportation (and holding a blue ribbon insurance policy for which I also pay dearly) I find myself on the precipice of financial ruin.  My savings has been depleted, I’ve fallen behind, and the promise of a “long and happy life” rings hollow.

It is easy to cut the things that can suck your money away: cable, eating out, concerts, and  events.  But they are also the very things that bring me joy at a time when I crave and need them the most.  I can move to a cheaper apartment, but that will mean longer travel at a time when I can’t travel far (for work or for healthcare).  And, yes, New York City is an expensive place to live regardless.  But these choices are not the things that cut me off at the knees–it is the cost of health care.

I put away money in my FSA–as much as it will allow.  But it will not be enough.  And to sweeten the pot my oncologist has referred me to a nephrologist because of some lab values that worsen with each month.  Great.  One more doctor, one more co-pay, more transportation costs, and probably more prescriptions.  More time away from the office.  I never once thought of my health.  Indeed, I tried to get out of going entirely.  I fought with my oncologist, I accused her of seeing dust where there was none, I had physician fatigue and was sick and tired of doctors, but I had to cave.  She saw dust, nasty dust.  So I have to go.

And I am tired.  So tired and exhausted.  Every few days I take to my bed with the vapors and sleep and sleep and sleep.  Hours of sleep.  I despise being useless, yet I have no energy to do anything.

And all the while I keep accumulating more miles on the road to financial ruin.  Unfortunately I am not the only human being on this road.  It’s an endless road of financial refugees pushing forward as best they can while the enemy bites close to their heels.

How do we handle this, folks?  What do you do to help ameliorate the crushing effect of financial hardship at the same time you’re trying to stay alive?  Is it donations?  Organizational assistance?  And how many hoops must you jump through to satisfy the needs of an organizational paper trail while you are too fatigued to care?

No, doctors tell you a lot of things.  But they don’t tell you everything.

This entry was posted in Finances, My Stage IV Life, Physicians, Stage IV Musings and tagged , , , , , , , , , , , , , , , . Bookmark the permalink.

22 Responses to The Road to Ruin

  1. This is such a great post and I can second, third, and fourth, almost everything here. I am borderline destitute since diagnosis in 2011. No job, no stable (good/reliable) healthcare, thankfully I live at home but I feel so guilty for putting this on my mom. How are we supposed to survive? I cannot do what I once did for employment and as more time passes I feel more SUCKED DOWN into the abyss.

    Thanks for letting me know that I am not the only one who is struggling.

    • Scorchy says:

      Oh, honey, I am so sorry. This is the side of cancer no one sees–or wants to see. It’s all fun and pink ribbons until you have nothing to your name and demoralized. This is a reality and it’s the thing no one talks about. Saving my life? Really? For what? That’s what we say often enough.

      My thoughts are with you. Useless, I know, but the only thing I can do. xoxo

  2. juneaubugg says:

    Scorchy – my friend here at work passed away in November. She had very aggressive uterine cancer (and was a BC survivor). She was single, no children and continued to work through August because she “had to”. The medical bills were draining her and the insurance we have here at work, well sucks (I’m on my husbands which is leaps and bounds better – but I still exhausted my FSA and then some last year…. and that is just the follow-up appointments and tests; even though I done with “treatment… I digress…) – ANYWAY, Renee…. she worked until August when she decided to just let the bills pile up. Screw her mortgage, and her copays. She had no one who they could go after to get the monies from. She went on a cruise…. where she actually collapsed, was med flighted home and passed away.

    • Scorchy says:

      God bless her, man. She took that risk and died–I hope–happy. I am down, but not out. I’ve had to borrow some from my retirement savings (which I have to pay back, of course–another bill). These are the sacred dollars. I ones you don’t touch. Sacred no more.

  3. Sucks that an illness can not only drain you physically and mentally, but then goes on to kick us when we’re down again, financially. Fuck cancer and all that it takes away! I love ya Scorch! Let’s all have a better year! XOXO

  4. alison68 says:

    Hi, i’m stage 3 grade 3 and i got a big pay out from my insurance. The next day my company’s regulator’s went into liquidation. Can you believe my bad luck. All my money went on living till i found a new regulator.
    I made friends with a dear blogger and i would send her money because she and her family had nothing. Most people live on handouts and generosity of others. I dread the day this happens to me. Thinking of you. Xx

    • Scorchy says:

      It’s insane. I haven’t reached the point of depending on the kindness of strangers, but I think it is a disgrace that we even have to think about that–let alone do it.

      • alison68 says:

        It’s a sad fact but it is very common for cancer patients. My friend died last year and we were able to send her sister to visit her. It was the greatest gift to them both and i know my friend would have done the same for someone else. Money is nothing compared to a heathy life. Money makes you comfortable but little else.

  5. OyiaBrown says:

    Reblogged this on Oyia Brown.

  6. Victoria says:

    Scorchy, I read this first thing this morning and I had to go out on my porch and sit for a few minutes before I could calm down enough to write something without ranting.

    When I was diagnosed I got a lot of advice and some of it was, “You should come home (back to the US) for treatment.” Best health care system in the world, I was told. Better cure rates for cancer, some said. “Better than the socialized medicine where you are,” some sneered. One person even gave me a link to the stats. And all that was scary but in the end I took my chances here in France because I’ve been paying into this system (single-payer) for nearly 20 years now.
    I mean, what were these people thinking? That I would just show up in the US without a job, without insurance and just throw myself on the mercy of whoever and whatever I could get back in the States?

    And the French system turned out to be not just good, but great. Not a lot of frills but good care delivered by compassionate healthcare providers who never had to worry about whether or not something was covered or not.

    And when I read your words, Scorchy, I want to scream. Because that shouldn’t be happening in a developed country – a country where I still have many friends and relatives. And sometimes I feel terribly guilty because I’m not there to fight for something better and, believe me, local American politicians pay absolutely no attention whatsoever to their constituents overseas – I write letters and they don’t even bother to reply. Damn it, there is a better way – I have lived it – and from what I’ve read the French single-payer system is not only damn good care recognized the world over but they manage to deliver it way cheaper than the American system – and a better system modelled on what other countries are doing would make America much more competitive in a globalized world. Seems like a no-brainer to me.

    But I’m probably preaching to the choir here. Sorry for ranting. I have no solutions here, only prayers and a hope that things will change one day over there. For you, for my mom, for my sister-in-law, for my aunt, for my nieces and nephews….

    • Scorchy says:

      I hear you. Oh, I hear you. The US system benefits insurance companies only. You were/art smart to stay right where you are. There is this notion that the healthcare system is the best in the world. Well, there’s a distinct difference between healthcare and healthy *system*.

      The system has been broken for decades, yet these Teapublican morons feel no shame in advocating for its continued existence. After all, they get money to keep spreading a tainted message.

      I’m not on the street yet, but it astounds me how quickly my savings was eaten away. Crissakes.

  7. DrAttai says:

    I am so very sorry. Sending you love and a hug – and I wish that was enough.

  8. dglassme says:

    A road no one should have to travel, sorry Scorch this freaggin sucks!!!

  9. I am so sorry that you are facing 2014 without the financial resources you need. I wish I could change this world. It is unbelievable that we can’t fix that in the USA.

  10. Chandra says:

    So sorry to hear this added to everything else. No. “Added” is wrong, because it subsumes everything else in a way. Ugh.

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