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Chronicles of Mayo

[ 46 ] June 6, 2013 |

A year and a half ago, a friend and former student had a sudden, unexpected medical emergency. She’s telling her story here, and it’s fantastic stuff. Start at the beginning:

I peered over my doctor’s shoulder to have a look for myself at the CT scan on the computer screen. He was pointing to what looked like an Easter egg shaped blob which was situated in my sinus cavity. I nodded my head at him waiting for him to tell me that it was something easy to fix. To my frustration all he did was look at me.

“So what is it?” I asked after a few seconds of silence. Up until now, I had thought he would tell me I had a sinus infection. My head had felt stopped up for weeks and my right eye hurt whenever it moved. My GP had been giving me antibiotics and prednisone for the past month until he threw up his hands and referred me to an ENT specialist. I just figured this guy would have stronger meds and we could be done with it already.

Comments (46)

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  1. Gone2Ground says:

    Yikes!

    But as I read the most recent post, I had to wonder – why isn’t she covered under FMLA? You are allowed to take up to 12 weeks unpaid leave and still get your job back, keep your insurance, etc. Her boss and the HR people are idiots if they don’t know this…it sounded like she was employed at a university, which would fit the bill for an employer large enough to have to comply with FMLA.

    ??

    • Malaclypse says:

      You need to be employed 12 consecutive months before FMLA covers you.

      • cpinva says:

        she doesn’t really say how long she’s worked there, but you do get the sense it hasn’t been very long.

      • Malaclypse says:

        I was wrong – the 12 months need not be consecutive. But you do need 12 months of employment, and to work at least 1,250 hours during the 12 months immediately preceding the leave.

        • Gone2Ground says:

          Ah! I didn’t read enough……as usual.

          When I wanted to take some for maternity leave, I learned that your employer also has to have at least 50 (?) employees within a certain mileage radius (I think it was 100 miles)…I was working for a very large company with thousands of employees, but we were a satellite office with less than fifty. Nonetheless, they were OK with me taking unpaid time off, but I recall digging into the FMLA to determine my fate.

    • cpinva says:

      could be her employer doesn’t care, and kind of hopes she doesn’t know, so they can more easily get rid of her, without having to follow all those nasty rules and regulations.

      I had a sinusectomy (no tumor, thank goodness!) many years ago, I can relate to some of the things she’s going through. not a pleasant experience.

    • Dana says:

      This post explains the employment-related complications of her illness.

      • Gone2Ground says:

        I replied down below….but Good God. “If we make an exception for you we have to make an exception for everybody.”

        My response would have been, ‘Exactly’. Rules are not more important than people.

        • Malaclypse says:

          Yea, my thought was making an exception so that everybody with a tumor could get it removed would be a good exception. What is the fear? “Well, I was gonna work this week, but now that I know my job will be secure, I’ll just get a egg-sized tumor in my brain?”

          • aimai says:

            Ann Landers (the real one) used to be full of angry letters from men complaining that they had married the girl of their dreams and then found that she needed a lot of dental work. It had almost the status of an urban legend: women who married men in order to get their teeth fixed. People are going to get sick. They are going to get sick and need support and insurance precisely during these periods regardless of how long they’ve been working for a given company. This whole system is just crazy.

          • Gone2Ground says:

            Why am I 100% positive that Tamika in Employee Resources and all her bosses would NOT find this remotely funny?

            • delurking says:

              I’m really not sure of your point at all. Do you think Stephanie thinks the situation is funny?

              Well, okay, there is some black humor in some of her posts — but really, G2G, as someone who went through a similar situation (thyroid cancer without insurance when I was a graduate student, back in 1989), yeah, she’s not giggling, she’s drowning.

  2. jim, some guy in iowa says:

    i’m really impressed with what i’ve read so far

  3. PhoenixRising says:

    I had cancer of the eyeball, and I can relate too…except to the part about having employment at someplace where in theory aside from the circumstance of diagnosis within the first 90 days of employment, they’re supposed to pay you and let you come back to work. That’s not something I know anything about.

    Also one of the prime benefits to developing an invasive tumor in your eyeball is that everything happens while you’re fully clothed. I’m not familiar with any other course of disease that gets the patient from symptoms to diagnosis to treatment entirely in street clothes. No fasteners, you understand, because a lot of the modern machines don’t like metal, but I was dressed for the gym. The whole time. Which is apparently rare, based on her description of the prep for her surgery.

    • aimai says:

      I just want to say that I’m terribly sorry you had to go through that, PR. i can’t imagine the horror of the enemy within being inside your own eyeball.

      • PhoenixRising says:

        Oh, it was actually less scary than my wife’s leukemia. The cancer was on the surface, which is why I knew I needed treatment–I could see it growing the week before the extraction.

        Ironically, at the cellular level it’s true that my body was trying to kill me but at the organism level, piss poor job of sneaking around the defenses.

  4. Murc says:

    This woman’s superiors are awful people and should be ashamed of themselves. They should never be entrusted with the care of pets, much less be making decisions involving the lives of real people.

  5. Gone2Ground says:

    Yeah, I’ve gotten a big hate on for “Tamika from Employee Services” Right. Now.

    SHeesh, and this is a UNIVERSITY?!? That teaches “THE HUMANITIES” I presume? You know, how to be a human being?

    SIFUABS

    • Dana says:

      HR. Nothing humane about those letters.

      • Fake Irishman says:

        Sitting across the bargaining table from those F****** is always a rage-inducing experience. Of course, they’re just doing their master’s wishes in the Provost’s office.

      • Malaclypse says:

        Depends where you work. We recently had a medical claim denied wrongly denied by insurance. I brought the bill to HR, and within 24 hours our claim was processed. Good HR people can do stuff like that. Tamika is the other kind.

    • Murc says:

      To play devil’s advocate here, there’s a possibility that Tamika (and the fact that she is identified by first name only is telling) is just a phone jockey.

      I’ve done a lot of help desk/information desk work in my time, from huge multi-hundred-person phone queues to one person whose job it is to answer the phone and pull files. It is very, very possible that Tamika’s entire job is to answer the phone and answer peoples questions about the exact nature of policies and that’s IT. If she tries to go above and beyond she won’t be rewarded for her initiative; she’ll get fired.

      (If you ever call somewhere, and you get a person who answers the phone with “Hi, this is ” the odds are pretty good you’ve gotten a drone. Especially if the answer sounds like it’s a sentence they say sixty or seventy times a day.)

  6. aimai says:

    This story is jaw dropping in its horror. I can hardly bear to read it and she is a brilliant writer who deftly defuses your anxiety even as she’s describing the indescribable.

    I want to add that one thing you discover about Universities in general,and University Health Care systems in particular, is that there is absolutely not there there when you need them. I got bit by a rabid dog while I was in Nepal doing my Ph.D. research. I had to have the rabies shots. They weren’t that expensive–a few hundred dollars–but Yale wouldn’t cover them. “We’re a small University” they said to me, plaintively. I was so young and naieve that I never carried catastrophic insurance coverage the entire time I was doing my field work in Nepal–almost three years. If something had happened to me I would have been entirely out of luck.

  7. Bizono says:

    Great writing. Also, difficult to read on multiple levels.

    Several years ago, I had two thyroid surgeries within a six week span (a thyroid lobectomy to remove a tumor, then, after the lab found cancer, a total thyroidectomy). I was very fortunate to have a job with enough tenure to allow me to miss about a month of work and health care insurance to pick up around $100,000 in hospital bills. Tens (or hundreds) of millions of working Americans would not have been so lucky.

    It’s disgusting and heartbreaking.

    I was also moved by the author’s comments on the affects of major surgery on both your body and your mental health. She’s gone (going?) through much more than I did, but I can empathize…

    • PhoenixRising says:

      Whole ‘nother kind of luck you didn’t list: That’s a common cancer. Which means you probably didn’t have to travel to one of two centers for treatment in the world.

      I’m lucky that I don’t have to travel from Australia to Philadelphia, but not lucky that my so-called health insurance treats the care I need as an out-of-network expense. Yep, that’s right, get the wrong disease and you may be out of network.

      I’m also lucky that my BFF lives 45 minutes of train ride from Philadelphia. Because when you leave the ocular oncology clinic, they don’t like to see the car keys dangling from your fingers…

    • delurking says:

      This is the cancer I had, Bizono, as a young graduate student without insurance. Same treatment, too, and same cost, very nearly. Almost 25 years later, my financial life (and thus my life in general) still has not recovered. At this point, I’ve resigned myself to the fact that it never will.

  8. That series was a great read, and a perfect example of the fact that although amazing places like Mayo exist, our healthcare system, and especially the work-related insurance system, is generally just fucking awful. There were so many ways for her story to have gone wrong, and so many people with the same story that end up maimed or dead simply because they didn’t have family/insurance/job/whatever. I really hope the ACA at least makes a tiny dent in that fuckingawfulness.

    • cpinva says:

      “That series was a great read, and a perfect example of the fact that although amazing places like Mayo exist, our healthcare system, and especially the work-related insurance system, is generally just fucking awful.”

      that can’t be right. why, we have the best healthcare/system in the known universe! if you become ill or get injured, you just roll right into the nearest emergency room, and they’ll fix you right up, for free. people travel 1,000′s of miles, to be injured or become ill in the US, just to take advantage of our free emergency room treatment.

  9. Dana says:

    As someone who has experienced chronic (but much less serious) health problems, her most recent post feels especially familiar. It’s difficult to handle the jokes, snide comments, gentle scolding, etc., that are made as if you’ve acted irresponsibly or gotten away with something. Part of you wants shrink away (“like a golden retriever who had just been swatted on the nose with a newspaper”) or start blubbering like a baby. Another part of you wants to go all Jack Nicholson on their asses, rip off their heads and shit in their dead skulls. Instead you opt for charming or funny. Them: “You look like your doing fine.” Me: “That’s just because I’m sooo good looking.”

  10. Such poise and clarity of voice in the face of unrelenting challenge is a rare gift. Impressive and endearing. Thanks for sharing.

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