So you’re chugging along doing all the things you do as a responsible citizen, you work, and pay your bills and your taxes, you are there for your children, and fighting for your marriage, you even volunteer. It’s spring, 1998, and gradually you just become so tired it’s a struggle merely to climb a flight of stairs.
Oh, well, you do have two daughters in college, another nearing the end of her senior year in high school, a son in middle school, a full-time job, a house to take care of, are back in college, and have two dogs, two cats, and oodles and oodles of marital strain.
Fatigue sort of goes with the territory, and like many working moms, you just push past it. You get up, you get the family off in various directions, you go to work, you go to class, you cook dinner, you help with homework, go to games and track meets, do housework, set boundaries for the two kids at home and field frequent counseling-like calls from the two who are not, you try to work through problems with your husband, and you collapse exhausted into bed, get up the next day, and do it all over again – it’s a routine you dare not interrupt with reflections on your fatigue – there is no time.
Then one day...
You show up two weeks later than you should have to the hairstylist (pretty common when you are constantly pressed for time) and instead of the usual lecture about the color of your roots, she turns you around in the chair and says:
“I look at people’s skin tones all day long and try to decide the best coloring for their hair, and I can tell you this: gray is not a normal human skin tone. Get out of here right now and go see your doctor.”
For some reason, though she is not the first person to note you don’t look your best lately, this is the one thing that manages to penetrate the fatigue-fog and you do as you are told.
You call on the way, check in, sit down in the crowded waiting room resigned to waiting for a couple of hours, and a mere minute later the doctor, passing by the glassed in sliding windows on the other side of the wall catches sight of you, comes out, and demands to know: “How did you get so anemic?” You say, “I am?” He says, “Come with me right now” takes your hand and drags you back to an examining room.
Later that day, at the oncologist/hematologist office, this new strange doctor takes blood, orders up an outpatient transfusion, tells you that you no doubt have acute myelogenous leukemia, could keel over dead at any moment as long as you are untreated, and should now go home and call him the very minute the HMO calls you and tells you to check into some local hospital or the other – but should on no account whatsoever check into that local hospital.
You find this direction to avoid hospitalization confusing, in light of the “keel over dead untreated” stuff and say so. Whereupon oncologist/hematologist guy says HMO will try to check you into local or even regional hospital – because it’s cheaper – but in his opinion no local or regional hospital should be treating leukemia, since cure rates double in large teaching institutions. Risk of keeling over dead while he is arguing for your life with HMO is less than risk of dying in local hospital. Then he writes you a list of five hospitals in Chicago that you can allow yourself to be checked into, and says if it’s one of these ok, but it won’t be, so call me when they tell you to go to a local hospital.
Sure enough, he’s right; they do, the very next day. You call him. He works some magic you know naught of (though local rumor tells you later that he informed HMO that he will be sure to make himself available to testify at your spouse’s wrongful death suit later) and you get the referral to the large teaching institution later that day.
Telling your children...no, you won’t write the details here, beyond saying that especially for someone who lost a parent at the age of eleven, it’s the hardest thing you’ve ever done to try to be honest about the prognosis (which is grim) but reassuring about your love for them and intent to fight for your life.
Skip ahead then. On your first day in large teaching institution, you are visited by a social worker, who surprises you by demanding to know not the details of your home life, or about your state of mind on being diagnosed with a more-lethal-than-not form of cancer, but simply: “Who is carrying your insurance, you or your husband?”
You think this is rather cold for a social worker and inform her somewhat frostily that you are sure the bill will be taken care of – it’s pre-approved.
Social worker looks at you with what you interpret as pity and says it’s really, really important. So you say, spouse, as you work for small non-profit that offers no benefits, but also admit to her that you think marriage is for sure doomed now.
“Good, good!” she says.
And you wonder why, why, on top of extra-lethal form of cancer, must you also get unbalanced social worker?
She must be able to tell from your expression that you think she’s nuts, because she explains, like so: