Groupon, groupoff: so much for that eyelash perm

In this day and age, well past the dawning of Web 2.0 and nearly, I suspect, near its sunset, many, many entities want to sign me up to spend more money. Their premise? Since we have such a large buying group, it's a bargain.

Oh, really?

Explain to me, please, why on earth I would purchase a Japanese eyelash perm, at any price, for any reason. I understand the Japanese are known for straight hair. I get it: I sent hair straightener for black woman to Dona, the year she lived in Japan. Not a lot of African-American or Caribbean-American women in Tokyo circa 1985, before the multi-culti globalization of our little world.

If Japanese women were curling their eyelashes, they probably did it the old-fashioned way: with the type of metal eyelash crimper last seen by me circa 1970, when my bunk counselor -- at an all-girls' camp -- persisted in doing full makeup every morning.

In retrospect, who was the counselor primping for? Not the other female counselors, not circa 1970, when bras were flung with abandon, underarm hair and unshaven legs were a political statement, and the word "femme" had yet to come into popular usage. (Even now, it's only used in certain circles, and I'm not quite sure I understand the complete definition, or if it varies, city by city, urban by rural.) I'll never know, except to chalk it up to pre-feminist cultural conditioning.

But I digress: before chemo, I might not have realized that the everything-must-go sale my hair follicles staged was complete, and I would not have grasped the full extent of the loss-of-hair. It never would have occurred to me that my eye lashes were lacking.

(Yea, you -- tell me my hair will grow back and I will ask you if you've ever seen your pubic hair on a wad of toilet paper.) It does grow -- but not back -- it grows in textures and levels of curliness not found on any head of mine I ever brushed. My eyelashes hold mascara now just as well as years ago.

When my hair, now 3 inches in length, started its regrowth, it was not the hair I had cut off in the ponytail to donate to other women with cancer. That hair was thick, and long. I don't recognize myself as the woman in the mirror with short, curly, hair. She looks too old to be me.

That may be the woman I have become, but I've yet to adapt to her, the one with a scar down her chest where the surgeon opened her sternum, and the one whose other incision, now healing, came from inserting and removing the quarter-size port under her skin, at a level just above where my cleavage, such as it remains, happens to be. That, and having been a Superfund site for several months. Do the poisons ever leave?

Here is where I step sharply on "groupoff." I missed the day when my email bargain-getter sent trampoline lessons on sale. Groupon? Middle-aged women in circus school? In Brooklyn, on a street name I recognize from my childhood in the 'burbs, but not directly over the East River? Not part of any group that I can imagine, not without an ambulance and an orthopedist nearby.

If you're of an age to try the tramp or flying on wires, perhaps you have not reached the age where you understand the repercussions of signing a waiver of responsibility. Or, no one has texted the legality (or lack) of the form to you. Or you are one of the various lemmings comprising the group for which these "bargains" are targeted.

In high school, I loved the tramp (not the dirty little man outside the gym). But not now, in what I assume to be the midpoint of my life. No sane person wants me, veering on osteoporosis, to hop up on that tramp to jump and fly. My bones might not make it through intact, for one reason; another, bigger question: could I ever feel as free jumping now as I did at 14, when fear was not a part of my physical makeup? I'm guessing, not so much.

"Freedom's just another word for, nothing left to lose," or so sang Janis Joplin, at the ripe old age of 25 or so. Apparently it look me longer to lose my water-wings and training wheels. Twice as long, to be precise.

Having stepped over the medical threshold into the land of illness, of temporary disability, some of my fears have grown, but others? Not so much. Sure, there's the State Department. I hear it has issued a warning on travel to Mexico.

I'm sure there was one on Haiti, at least part of the time I was there. It didn't occur to me to be afraid. And Mexico? Border drug trafficking is not happening 1000 miles from the California state line. Where I stay in Baja, the only drugs on special are Viagra, anti-depressants, and Retin A. Each is freely available in pharmacies. I'm not even fearful of germs -- 20 years of visiting Haiti, and I know what doesn't kill you makes you stronger. (Cf. Superfund site).

My friends confuse the border with Cabos, 1000 miles down the peninsula. In timeshare-ville, guards blend in with the scenery, but I know they are there, just as I knew the staff paced the grounds in the Haitian beach where I went from girl child to grown woman.

Americans, except in war zones and potential political hotbeds (find me a dictator the U.S. didn't fly out of his country in the past 25 years, and I'll show you a dead man), didn't used to need private security protection. Now that we've globalized, U.S. citizens are easy targets.

Especially targeted are those those who give rise to the ugly American stereotype, one I've discovered is not without those secured to it, the ones who don't give a damn that, hey, no one speaks English here and speaking louder is not going to change that.

Volume is not the key to language comprehension, much to the chagrin of many. (Take that, groupon, and go global.) Hand signals are much more effective. In moments of desperation, you will get your point across -- perhaps not in a grammatical sentence, but in the way you most need at that very second.

Or so I continue to trust, as my attempts to learn Spanish (where is that group discount when you need it?) regress, and fluent French dating back 30+ years spews forth in in its place.

Why such an emphasis on group discounts in the cyber age? Because no one would ever leave the keyboard, the cell phone, the "smart" phone, or the PDA? Makes me think the Internet is not where we find each other; it's where our connections fray, and, if you're not careful, lose all meaning.

Groupon? Is this for 21st century groupies? If you're offering discounts, perhaps you or your oh-so-clever computer, could devise a few not designed to add to a woman's insecurities. Don't try to make me think my eyelashes are doomed, the way the teeth-whitening crowd has tried to convince me to add that task to daily maintenance. It's not working.

If that's groupon, stop the world -- I want to groupoff.

Nearly bald soprano passes her PET scan

Atop my head is peach fuzz, getting longer by the day. Chemo is gone from my body and my datebook, as are almost daily visits to the doctor for blood counts. Best of all, the PET scan did not light up anywhere.

So, I'm officially on the road to recovery. It's a slow one, involving a great deal of sleep. Fortunately, sleep is my forte. You might even call it a vocation. Closer still, my true calling in life is as a sleeper. Twelve hours a day? No problem.

Oh, you wanted me awake and coherent? At what hour? Whatever the hour, you can never be sure of how cogent I'll be. I have been known to converse with people -- real, live ones standing next to my bed -- without regaining consciousness. Unconscious telephone calls? Been there, done that.

What are my plans, now that I've been blessed by the medical academy? My plan is not to plan, not now. I have just come through months when planning anything wasn't possible, and, given the strength of chemo fatigue, I don't think this state of affairs will change for a while.

It is interesting, to be in my fiftieth year and once again, have no clue what I am going to do with my life. Ideas float around, one or two in particular, but the execution of them in real life, well, that may take some doing.

I've got the time now, to think -- or not, depending on the day. And blogging? Not so much. Too much focus required, at least at the moment. Yet it's comforting to know, when I'm ready, my blog will be waiting.

Hairless at home

No one signs up for chemotherapy with any kind of informed consent. Why? Info is given on a need-t0-know basis, while my 5 minutes on Google gave me the questions I needed to ask.

Sure, they tell you about losing your hair -- right on schedule, it came out in tufts. There was enough hair in my wastebasket to build a bird's nest. No one says, this process will take a week or more. You will shed. You will think you are molting. You will be surprised at what hairs remain and which ones detach with ease.

Then, you go to Wigville for the actual wig fitting. Explanations for taping wig to head prove more complicated than my brain can process. On my head, wig feels like an imposter's hair. Name for wig? Cousin It. No gender required. Cousin It's relative is "ittle," a band of hair that requires a cap over it so as not to expose the skull.

I'm told I have a lovely scalp. I'm told Cousin It looks real. Personally, I can't imagine that anyone could have any other response. Just as with new babies, all of them are cute, even the ugly ones. When you are hairless, compliments take on a different slant.

Nausea is commonly mentioned as a side effect, although the question is posed, "are you nauseous?" and proper English calls for, "are you nauseated?" P.S.: One day after chemo does not a clean couple of weeks create. You may not be nauseated the day of or during -- but there's a two-week interval to follow, when any day could be the bad day.

It is, basically, a crap shoot, how each person will react to toxic chemicals "infused" into her body. Your mileage, it seems, may vary. That covers a lot of reactions, but still, what you think when you start and what you conclude after four hours attached to a needle attached to tubing that glides the toxins into your body is unpredictable. Every day is a surprise: some are just days of slow movement; others are filled with queasy hours.

Things I researched; things no one would have otherwise mentioned: peripheral neuropathy, possible mouth sores and strange chemical tastes in mouth. Will chemo slow down the healing of the surgical scars? What foods may I and may I not consume? Do I need someone else to discern the temperature of my bathwater? How germ free do I need to make my house? Should I just shower in Purell and call it a day?

Do I need distilled water for ice cubes? How do I know good white cells from bad ones? In high school, we had to dissect a frog, twice. Why couldn't someone have taught me, say, some human anatomy? Something to do with how our bodies work? Surely we could have passed on the damn frog.

This is not the brave new world I envisioned. It is, however, very much in line with the title of poet M. Wyrebek's book: Be Properly Scared. I read the poems when they were published: the story of M's life from age 16 and her diagnosis onward. She was someone I admired -- talented, pretty, smart, funny -- and her life cut short as the bad cells multiplied and won the battle.

I guess I am lucky: the odds are in my favor. What the exact numbers are, I don't know. Another factoid hidden from the hairless. Chemo is not an adventure for those who need situations clearly delineated. Clues don't get spelled out; clues bite you on the ass, and assume you'll recognize them as answers.

But watch me when I do engage in commerce with clerks who are idiots: I have no time for them, not that I ever did have much patience. What I have now is an answer for, could you wait a few minutes? Not today, not this week. The toxins running through my veins have me in their grip. I am in thrall to what will one day be considered as suitable to cure cancer as mercury once was to cure syphilis.

I pull off my cotton cap, show my scalp, and say, "No. Don't have the time. And unless you have cancer, you won't, don't, can't understand me, so lay off the platitudes." It may seem cruel, but if there is one time in my life when it truly is all about me, this is it. Everyone I know who has been on this cruel dance floor has traced the same choreography.

Lymphoma focuses what is left of the mind in a position sharper than its ever been before. The rest of the brain cells are off on a sojourn somewhere I can't find them. I have to cling to the ones that remain.

Minus my thymus; au revoir Haiti

To recap: the thymus gland lies beneath the breastbone in the middle of one's chest. It is considered a lymph gland, not an endocrine one. Meaning, that, for a child and a teenager, this is the go-to spot for generating immune cells.

For the average adult, this gland is vestigial, about as useful as an appendix or tonsils. For me, however, the smoker's lung scan I had in Jan. 2007 -- which insurance/"medical benefits" didn't pay for -- gave a point of comparison with the CAT scan I had in September. Net result? Gland had doubled in size.

Getting to the CAT scan was easy: I went to Dr. Training Bra, aka Baby Doc, my 12-year-old insurance doctor ("in network") for a smoker's cough late last August. She took a chest X-ray and sent me for the CAT scan. And that was as far as she went.

Baby Doc, as you may have recently heard, since the Haiti I know and love was turned on its side last week, was a not-very-bright dictator who ruled that country during many of my years there. Like Training Bra, he was totally incompetent.

But Haiti was relatively calm, and open for business. Given the political structure, as long as you knew who to pay off, you were good to go. Since Baby Doc's forced (U.S. aided) departure in 1986, no one has known who is in charge for more than half a minute or so.

I'm afraid all the well-meaning aid in the world can't fix Haiti's problems. Rebuild? That would assume infrastructure that never existed in the first place.

Forget democracy: start with potable water, food, and shelter. I don't care who is running the show; I just care that the show runner is consistent. Although I'm hoping for a step up from Training Bra, whose consistent mien was inattentive, bordering on awful, and who demonstrated a less than active interest in me, the patient.

Kyona Beach, Haiti: the last place I saw my father alive, some 19 years and 14 days ago. Four days from now will mark 19 full years since my father died.

CAT scan results, September 8: lungs are clear, but thymus growth indicates I may have lymphoma. The word is on the table then, although no one allowed me to ask questions about it -- or, at least, no one would listen and answer me. What I picked up on is, the radiologists' report says, send her for a PET scan.

Thus Catch 22 begins: Insurance won't pay for PET scan unless I have a cancer diagnosis; PET scan is the test that shows the abnormal cell activity indicating cancer is present. Logic here? Not so much. And Training Bra did not, as I explicitly asked her to to, advocate for me to get the insurance company on board with the test.

So I exit the mismanaged nightmare system to return to The Good Doctor, the internist who won't take my insurance but who actually gives a shit about me and my health. TGD sends me to a pulmonologist.

Lung man compares the CAT scan film/disk with the previous smoker's scan. While he does think the gland has to be removed, lymphoma doesn't make it onto his list of concerns.

A few weeks later, I meet the surgeon. He's got the social skills of an 8th grade boy. I'm hoping that his handiwork is on a much higher level. His office, at least, gets the PET scan approved while I am waiting to schedule thymus removal surgery. Like the docs before him, he thinks this thymus thing will be nothing.

I wait seven weeks for the PET scan. December 2, Surgeon removes thymus -- not laparoscopically as advertised, but through a five-inch incision in the middle of my chest. It will be six to eight weeks before the bone knits back together. Meanwhile, I also have small slashes across the edge of one breast: the failed attempt at laparoscopy.

Surgeon thinks thymus will be nothing all the way until the pathology report comes back from the lab December 11. When I go for the post-op checkup, finally someone voices what amplifies the down-the-rabbit-hole feeling I've been experiencing for two-plus months.

Yes, it's lymphoma, Surgeon says, not in the least bit concerned as to what that will mean to me. Oh, and here's an oncologist in the next office. My work is done. Surgeon appears to have no emotion whatsoever about what the pathology tells us. He doesn't even say, I'm sorry.

Nor does he concede in the office that he thought the growth was benign, which is what he told my mom and one of The Three Sisters after finishing my surgery. Post-op, Surgeon doesn't seem the least bit empathic or sympathetic or to have any emotion whatsoever about what the pathology tells us. As my mom would say, "fuck him. Or rather, don't."

Surgeon has no answer for why the water in one of New York's better hospitals is not potable. Nor has he an answer for why the hospital was unable to supply one of my medications and I needed to bring it from home.

Nor does he check to see that the resident who let me go knew how to write a prescription: she wrote for ZERO pills. Were I not astute at proofreading, that would have been an ugly drugstore showdown.

Possibly the worse part of the do-it-yourself hospital experience was that if I hadn't learned to disconnect the monitor that measured the oxygen in my blood, I would have gotten even less sleep than I did. (The monitor, it seems, was not hooked up to the nursing station.)

In Haiti, I grew up brushing my teeth with an inch of bottled water in a glass. In what used to be called the Third World, that is par for the course. To find out that the hospital in upper Manhattan required the same course of action was a surprise. To me, if you can't drink the water, you damn well better have palm trees and a beach.

I return to TGD, diagnosis in hand. Within an hour she has found an oncologist who is well respected as a hematologist and he can see me the next day at 9:20 am. Not my time of day, she knows, but at this point, who cares.

Enter Dr. W., the recommended oncologist I like, in as much as I'm going to like one. I can't bear to go for another opinion; I have had doctors and tests filling my weeks since September.

So: I have non-Hodgkin's large diffuse B cell lymphoma. As cancers go, it is common as dirt, and it is one of the "good" cancers. Sure, like second place in the beauty contest in the yellow Community Chest cards.

What's good is, I'm at stage 2: very curable, with standard chemo protocol. I don't need the specialization of the cancer factory at Sloan Kettering. I can stay with Dr. W. and have my treatments in his office. I don't have to go to a hospital just to get the poisons that will save me "infused" into my body. Infused. One hell of a word choice, one of many in the new lexicon.

I feel like a Vietnamese town during the war: we must destroy the village in order to save it. Didn't make sense when I was 10; doesn't make any more sense now. But there's the metaphor and that is how it applies.

Thus far, I've had round one of chemo. So far, no major nausea or other side effects. However, the toxins have just started to work. I'm told by day 10 or 12, my hair will start to go. That hair I spent two years tending like the back 40.

Sure, it grows back: but still, the idea of lifting my hand to my head and hair just flying through my fingers is an experience I dread. And yes, I bought a wig -- from the store that refers to these items as "she" and "her."

Not having received the memo telling me that English has gendered nouns, I want to say, "IT. IT. IT. It is an object." But wigville is another stop I never anticipated. I am learning a new language every day, one that I hope you, any and all, will never need to learn.

It may help you to know that my mother, after hearing my diagnosis, brought over a box of chicken soup mix for me. She and kitchens are not on good terms, and the last time, probably the only time, she made chicken soup from scratch was the night my father had a fatal heart attack in 1991. Culinary expertise and my mom don't go hand in hand. For us, soup is black comedy, not cure-all.

Discussions in the chemo lounge are fragmented, scary: some tell their entire stories, from diagnosis into X number of rounds of treatment. Exact diagnoses are volunteered; it is rude to ask. Some in the room have no hair. Some may have wigs, though I am not yet expert at distinguishing them.

I know one thing: if you lose (not that misplaced is exactly the proper term here) your hair and get a wig, it must have bangs, because you no longer have a nature hairline. I have not had bangs since I was 6. Right now, I'm just hoping I won't look like a Hasidic woman who has shaved her hair for her husband.

My mom offered to shave her head in solidarity with me, and then to wear a wig. If she cannot go though treatments in my stead, she wants me to know how much she would if she could. I tear up every time I consider the offer, but I have pointed out, Mom, we're not those kind of Jews.

People say, at least you have your sense of humor. I wonder: without it, how would I survive? My illness is drenched in irony, and that is the costume in which I suspect I will navigate the next several months. It is the only one I know. Here's hoping it helps.

Hair story, part 2

Turns out I need the ponytail after all. My medical odyssey has just begun. I've fired the doc-in-a-box employed by mismanged nightmare, and found some M.D.s who are knowledgeable and care about patients. The prognosis is good, but I am tired. Right now, I'm going to take a nap, and this blog is going on hiatus. Wish me well.

Hair today, donate tomorrow

After 22 months, and countless brushing, combing, shampooing, conditioning of the hair flowing down my back, I am set to donate a 9-inch ponytail. It's made of my hair, for women who have cancer, and will be sent to Pantene for a program that makes wigs for cancer patients.

The ponytail, as requested, is properly tied, and resting in a Ziplock bag, waiting for me to mail it off. Given that my medical merry-go-round won't stop until after I have surgery next week, I'm waiting for the pathology report before mailing it off.

This way, I won't need it. Call me superstitious, but that's my nature: hedge your bets when you can, especially if irony is an overriding element in the entire event. Donating my hair is as close as I've come to volunteering a little part of me for someone else. Have I ever given blood?

Let's see: until I was 40+, I weighed under 100 pounds, and the minimum weight is 115. By the time I got to that weight, the chemicals in my blood alone would render it useless to anyone who wasn't prone to depression, migraines, anxiety, high cholesterol, and osteopenia. So there's not much call for that.

But the hair: it took on a life of its own as I tended it these past few months. It required lots and lots of maintenance, something I will not miss. Shorter hair is easier -- into the shower and out again, without a lengthy battle with knots and tangles.

This would be my pink ribbon, the real badge I've been wearing to honor my friend Dona. I think she would prefer it to my buying a pink bra for breast cancer month. Dona died at the end of October, 2007, and by January 2008, I had set out on my hair project.

Alice will be uploading photos to Facebook, that spot in the world where most of her friends live now -- before, during and after shots, carefully taken by one of The Three Sisters. That is, after her surgery.

Surgery is set for next week, and two of the three sisters have appointed themselves my health care advocate and brains. They have been to the surgeon with me, asked all the pertinent questions (they know this drill all too well), and will babysit my mom when I am on the table.

At this point, I don't want to know anymore about this surgery except that it will be over a week from now, and I will be in some drugged-up state at this time 7 days from now, and the drugs probably won't include nicotine.

That one, I will miss a lot. It's been my friend for a long time. Back when Dona was alive, we went to dinner in D.C., and I was amazed to find smoking sections in the restaurants, when Mayor Mike had scuttled that possibility in Wonderland. And she didn't care -- her cancer was her own, and that was plenty to contend with.

As for weed, Dona was all for it. Medicinal or not, that was, in part, how she got by. The rest of how she got by, mostly I don't know. What I do know is, I grew my hair in her memory, and soon, it will belong to someone else, someone I don't know.

I think of my donation as a gift more valuable than money -- I don't miss long hair; the ponytail is probably not an appropriate middle-age 'do, not that I have much to do with styling and shaping and applying product to keep hair from moving.

I am happy to retire the big hair clip, the only one that held all my hair in a bun all summer into fall. I am hoping someone will benefit from this tiny part of me, and that wherever Dona is, she will know I was thinking of her.