Once upon a time I had long golden curls. Genuine corkscrews. Until my first haircut, when I was five, at Best's Children's Barber Shop (a New York magnet at the time). The place was vaguely near Saint Patrick's cathedral and was probably gone with the wind before I hit adolescence. But I remember how light my head felt after those long golden curls had been removed. That was my first experience of hair not returning to a previous state. Maybe my scalp thought itself too grown-up for those corkscrew curls, but I rather missed them.
My head felt even lighter after the first four doses of epirubicin. After all my hair fell out.
Chemo, as expected, produced first baldness and then "chemo-hair"--a frizzy condition unameliorated by coconut goop, L'Oreal Extraorinary oil, Jasmine oil from the local Asian store, coriander glop, mint glop, this cure, that cure. They all smell nice and have no effect whatsoever.
My hair did grow back. But it stands on end, permanently, sort of like my nerves. There was the additional month of radiation that produced a bald rectangle, fairly well hidden by the flap of hair above it. That geometric patch is now carpeted with kinky little curls--it's poodly. The Ibrance does make a few strands fall out after every shower but, then again, I do have more hair than what I started with back before cancer. Thick hair is one of the more interesting and less unpleasant side effects. I am told that if I am patient, I will find that approximately normal hair will return (or rather "your hair will calm down") in around five years. Meanwhile, I rather enjoy the coriander, coconut and mint glop. Without these concoctions, the hair looks marginally worse. With them, it reaches the outer borders of tame. But I imagine a future, one in which, five years from now, I am (1) alive and (2) my former hairdo has returned.
Thursday, April 25, 2019
Saturday, April 13, 2019
Pharmacy Follies and the Cancer Couple
I went to fill my husband's prescription for the new, gene-targeting cancer drugs that we hope will save his life at the local pharmacy and the clerk toting up the cost said, "Oh, this will be expensive." But I had my bank card with me. No problem!
My bank card doesn't let me charge more than 2,000 euros in a single day--something I've never been in danger of doing. The bill for my husband's meds came to over 5,000 euros--also more than twice what's currently in my account.
We made an arrangement with the pharmacy. This is Germany! Generous, golden Germany--"we know you," said the smiling clerk, suggesting she bill us at the end of the month, a move which will allow my husband to fill out his health insurance forms and possibly even be reimbursed by the time we have to pay that bill.
Meanwhile, I handed over my prescriptions, the ones they fill for me every month, the ones that keep me living a relatively normal life with almost no hair loss and only slight breathlessness, and lo! This month, one of them was "unavailable."
"But I get it here every month," I said.
"Well, it will have to be produced by the factory," said the clerk. They special ordered it. There's a shortage, they said. They hope they'll get it to me in ten days.
I called the oncologist's office and they do have an emergency supply in a slightly lower dosage that I can take if the pharmacy doesn't come through. I just looked on Doc Bestendonk, which we've previously used for stuff like Sinupret and Umckaloabo, and found that in three-to-five business days I can get the tablets I need for 2.741,61 euros. Which is 130.55 euros per pill. Imagine what that costs in Donald Trump's America. No, don't. If I send my prescription. And pay for it myself. Even in golden Germany. But I think my pharmacy will probably come through . . . stay tuned.
P.S. And they did come through! Even sooner than they'd promised.
My bank card doesn't let me charge more than 2,000 euros in a single day--something I've never been in danger of doing. The bill for my husband's meds came to over 5,000 euros--also more than twice what's currently in my account.
We made an arrangement with the pharmacy. This is Germany! Generous, golden Germany--"we know you," said the smiling clerk, suggesting she bill us at the end of the month, a move which will allow my husband to fill out his health insurance forms and possibly even be reimbursed by the time we have to pay that bill.
Meanwhile, I handed over my prescriptions, the ones they fill for me every month, the ones that keep me living a relatively normal life with almost no hair loss and only slight breathlessness, and lo! This month, one of them was "unavailable."
"But I get it here every month," I said.
"Well, it will have to be produced by the factory," said the clerk. They special ordered it. There's a shortage, they said. They hope they'll get it to me in ten days.
I called the oncologist's office and they do have an emergency supply in a slightly lower dosage that I can take if the pharmacy doesn't come through. I just looked on Doc Bestendonk, which we've previously used for stuff like Sinupret and Umckaloabo, and found that in three-to-five business days I can get the tablets I need for 2.741,61 euros. Which is 130.55 euros per pill. Imagine what that costs in Donald Trump's America. No, don't. If I send my prescription. And pay for it myself. Even in golden Germany. But I think my pharmacy will probably come through . . . stay tuned.
P.S. And they did come through! Even sooner than they'd promised.
Wednesday, April 10, 2019
When Lung Cancer is Good News: Ten Tips
(1) When it's curable.
(2) When your doctors thought you had a different, worsening condition that's not curable.
(3) When because you have some cancerous tumors on your lung, you won't be getting that lung transplant.
(4) Since you won't be getting that lung transplant, you won't have to take immuno-suppresants, and you won't have to worry that every little spore of invisible fungus you might inhale in your garden might make you develop a lethal infection.
(5) Since you won't be getting that lung transplant, you don't have to ditch all your houseplants.
(6) Since you won't be getting that lung transplant, you don't have to whack the spiderwebs off the ceiling with the broom, narrowly missing the expensive bulb.
(7) You can stop losing weight, something the doctor said you had to do.
(8) Your wife knows your breathing won't get even worse. It might get better!
(9) When your doctor has the mind of Dr. House, but none of the sarcasm.
(10) When, finally, you have the right diagnosis after years of enduring the wrong one.
(2) When your doctors thought you had a different, worsening condition that's not curable.
(3) When because you have some cancerous tumors on your lung, you won't be getting that lung transplant.
(4) Since you won't be getting that lung transplant, you won't have to take immuno-suppresants, and you won't have to worry that every little spore of invisible fungus you might inhale in your garden might make you develop a lethal infection.
(5) Since you won't be getting that lung transplant, you don't have to ditch all your houseplants.
(6) Since you won't be getting that lung transplant, you don't have to whack the spiderwebs off the ceiling with the broom, narrowly missing the expensive bulb.
(7) You can stop losing weight, something the doctor said you had to do.
(8) Your wife knows your breathing won't get even worse. It might get better!
(9) When your doctor has the mind of Dr. House, but none of the sarcasm.
(10) When, finally, you have the right diagnosis after years of enduring the wrong one.
Monday, April 1, 2019
When Brexit Married the Robert Mueller Investigation
Once upon a time there was a little David Cameron and a big Theresa May. This is probably the time where I announce that I like Theresa May. She'd have triumphed over those awkward dancing memes if it hadn't been for the mess little Davy made. Of course, nobody's heard much from him since he walked offstage whistling the theme song from West Wing. Like my kids, he left the mess for Mommy to clean up. She's been doing her damndest. I applaud. She's been tending the monstrosity he left behind ever since: "Now, Brexit!" she says in measured tones, "Do behave!"
Meanwhile, back in the former colonies, Somebody Did Something to Robert Mueller. Scare him? Who knows. He's telling his investigation to lie low, but it keeps squeaking: "Daddy, I like that Brexit chick."
The scuttlebut, that little Brexit and squeaky Investigation are secretly going to wed reached reporters late last night. Ms. May and Mr. Mueller of course tried to restrain the two, but so headstrong, so unwilling to listen, so Romeo and Juliet-ish were they that nothing could be done. The two catastrophes are on their honeymoon, but planning to return and make everything worse than Climate Change. Stay tuned. Reports that they've already produced a child, Godawful, are pending. Soon we'll be Waiting for Godawful.
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