No longer a port in any storm

My porting days are over. Translation: I no longer have a chemo-needle-friendly "device" implanted in my chest. It's a far cry from where I was a year ago, at this time -- between rounds 1 and 2 of chemo, with 5 more to go

I've gone, done my time, and walked by the "infusion room" aka chemo lounge at my doctors' office, and finally, had a sigh of relief. No port, no entry. Here's to hoping no one ever wants to appoint me as a Superfund site again. Or make me a one-woman radioactive blip on the sidewalk. The only exception to the latter is, there will be more PET scans, more signs that I am, I hope, home free.

Home, of course, will never be the same again. This season I am snow-bound, but it's better than being the girl in a bubble. Hello, normal white cell count. Hello, immune system. So long, fare well bottles of Purell. Return to regularly scheduled interaction with the public. That is, once I find my snow boots.

I'm all set for sledding, apparel-wise: boots, snow pants, ski mittens, down coat with hood, extra cashmere cap for warmth, all requisite long underwear and thick socks. Only thing I'm missing is the sled, and the assurance of normal bone density. What would it say about me if I took a hill too fast, clipped into a tree, and broke my hip? Age-appropriate? Ha!

For public consumption and to speak the vernacular, I am a survivor. Not at all sure the word is appropriate to describe the experience, but that is what our language, in the world of cancer patients, has labeled appropriate. I have, for the record, survived worse: 40 years of depression vs. less than a year with a cancer diagnosis. By comparison, cancer was a walk in the park. Without snow gear. I'd hardly call it a trek, considering how I've felt in other circumstances.

With lymphoma, the odds were in my favor: 90% "cure" rate is what I'm told. "Cure," not "remission." After two solid years off chemo, "cured" is what they will call me. But what term will I use?

They say you can't go home again, and while that sentence applies to me literally -- my aunt and uncle's hotel in Lake Placid burned to the ground, and Haiti had, well prior to the earthquake, become a politically untenable place to go -- Wonderland, my hometown, looks different as well.

Tourists may like Toys R Us in Time Square, part of the Disneyfication a la Guiliani and Bloomberg; those of us with memories oddly enough prefer the old days, when that was a seedy part of town. We miss the fake ID joints, the peep shows, the 24/7 porn palaces and all the people who frequented them.

What price safety? Total loss of character and place? I'm sure the hookers made a better living than the minimum-wage folk now operating every chain restaurant in the land that's open to reassure tourists that Wonderland is "safe."

Sure, I no longer have to defend my city's crime rate -- in the old days, Detroit's and D.C.'s murder rates made ours look like amateur night -- but I have less of my city to defend. So much has succumbed to another strip of the global village with all of its big-box, made-in-China-but-sold-only-for-export chain stores bleeding our local shops dry that we're losing our personality.

I love New York? We used to lure visitors with a huge advertising campaign. Now busloads enter voluntarily. I would enjoy those who commute much more if they had to pay a percentage of the NY City tax dollars from which they benefit. New York is a city of first-responders, but no one counts how much it costs us and how our neighbors beyond the borough lines have benefited since we stopped collecting income tax from them.

We should have a cover charge for entry, even if it is "congestion pricing" for cars in midtown. We should have neighborhood stickers for cars, so the locals have their place in the street and let the out-of-towners resort to a garage. That is, we should also have temporary windshield-visible signs for residents to lend to those who park here explicitly to see us. That is, for those of us -- most of us, I suspect -- for whom owning a car would be more challenging that learning to speak a new language.

I fall into that category: never have I legally owned a car. As a teen and college kid, I had one that belonged to my parents, but never did I need learn any maintenance skills beyond filling the tank with gas and checking the oil under the hood.

These days I delegate even that little knowledge to those who drive me the most frequently: bus and subway drivers, plus taxi cabs and other car services. For me, maintaining a car simply means I have discount coupons on my refrigerator for whenever I need a ride to the airport.

If you need outdoor camping or related skills, don't call me. If you need urban camping tips, from conserving water to overriding electronic stove ignitions, call me. Inside I have battery-powered lamps, radio and fan; for the great outdoors? Snow boots. If you need a port for an indoor storm, I'll see what I can do. Outdoors? Baby, you're on your own.

Playing above the grass

From an article in The New York Times, this resonates with me: "Thomas R. Cole, author of a cultural history of aging, said he hailed anyone who, borrowing a phrase from his mother, age 85, 'is playing above the grass.' ”

What better way to put it? The ultimate division in life stages in five words. Far less of a cliche than keeping your head above water. Biggest problem is for those of us who never thought we would, regardless of circumstances, live to see past our 30th, 35th, or 36 birthdays. It's 15 years on now, and I hadn't anticipated this longevity.

Neither had several of my friends (a commonality I never expected to be growing each time I mention it). Thing is, we all forgot to plan. Live past 35? Really? From the age of 17, I somehow conjectured that twice that age would be about as good as it would get.

It seems I gravely miscalculated. Post-chemo, the miscalculation is all the more vivid. What has proved to be dead-on, though, is that about the time I was turning 35, the world I had known was becoming more and more lost and the world as it has come to be has taken over. Hey, I was an English major.

Apart from being the first family on the block to have a microwave; play Pong with the TV set sporting a green-on-black display; own a VCR old enough to record the original not-ready-for-prime-time SNL gang; and possess a home fax machine -- the better to see each week's football spreads, technology and I have not been fast friends.

Sure, the first computer moved in in 1985 -- and I've been editing on computer almost since my work life began -- but, honestly, I preferred it back in the day when I didn't feel electronics had showed my brain the door. I like to be smarter than the machines with which I'm involved.

The longer I play above the grass, the less likely it seems I have any interest in keeping up with the latest widgetry. The user-friendly concept and I seem to have had a falling out. I want my computer to be like a car: when I was 16, I could drive one just fine, and for the most part, nothing has changed on the dashboard to change that.

That's more than 30 years in real time. Thirty years in computer land is another story. While I can still operate the original computer, which had the best word processing software I've ever encountered, all the latest twists and wrinkles leave me cold.

It's a brave new world out there, and somehow, I forgot to prepare for it.

The girl in a bubble: white blood cells needed

Today my white blood count reached a new nadir: I have 400, practically few enough that someone could count them, and someone else could start singing 400 white blood cells in her bod, 400 white blood cells; take any down and pass them around, 399 white blood cells in her bod....

A normal reading is 4,800 to 10,000. So I don't exactly have any to spare. This week? Like the others, but more so. Every day, visit the doctor. Get blood pressure taken, temperature taken, finger pricked to put blood on a slide; get weighed; see blood test results before doctor hits the exam room and know: today, another 480cc shot of drug to hasten white blood cell formation.

Why so important? Chemo nukes out all the cells, the good and the bad. Then you have a hiatus, 2 weeks when the blood is supposed to regenerate. Thing is, every cycle of chemo makes it more difficult for the bone marrow to make the cells. But if I don't have a high enough count a week from now, then I can't get the chemo to nuke the cells that may exist.

Makes that much sense to me, too.

Then there are the red blood cells -- too few and you have no energy, not to mention having no immune system since the white cells are so few and far between. And let us not forget the platelet count. Normal? 130-400 of whatever unit is being counted. Me? Down to 55. You could definitely sing the bottles of beer song to that.

Platelets at this stage equal very limited blood clotting ability. A paper cut could send me to the hospital. This thought is not cheering. Neither is the idea that I have to be incredibly careful not to walk into anything, because I'd have a bruise for months.

People tell me, at least you still have your sense of humor. What else am I going to have? Shall we all start to sing the platelet count song? I don't have much in the way of intellectual thought processes to get in the way of a good old-fashioned sing-along.

Lymphoma? Not pretty. Can't dress it up and take it anywhere, not without sterile precautions. Time for another round of Purell, what I'm wearing instead of perfume this winter. I used to wear Joy. Even if I couldn't feel it, I could smell it. Now, it doesn't make a difference, except in the irony department -- but you knew I was good for that.

Letter and a rant: antisocial media

Dear RC,

My apologies for sending this through FB, but you came up on the side of the page that makes "suggestions." FB today burped up that you have "only 16 friends." I have, by its count, more than 100 -- you can guess which one I think is more realistic.

This whole social media thing is really ludicrous. I miss the old days -- hell, like, last week -- when people, myself included, weren't "sharing"/ broadcasting our 15-word thoughts (or, fewer and not thoughts but "is waiting on line at the store") to the world. I know this is somehow R.'s bread and butter, but no matter what she explains, I don't get it.

Call me old fashioned, but call me -- on the phone - do not text me, IM me or whatever passes for digital communication. I'm sucked in and simultaneously sickened.

Started reading a book on the train yesterday and realized how much I miss just plain reading your basic book. Hard copy, suited to recovering from coffee spills, page-turning books.

I don't care what the digital natives (read the term today and liked it) are trying to say: you can't mourn in cyberspace. Not unless you're working on complete detachment. Is this the wave of the next generation? Do they think they can talk to a shrink by typing? And get any kind of results?

No, when it comes to full-on emotion, I'm not posting it to FB. This whole FB thing makes blogging look positively antiquated, in that when I write in my blog, I'm trying to make a real point. What I say on FB is stuff left over floating when my brain has gone on hiatus.

I may be wintering on FB, due to my housebound status, but if I could go outside and not be afraid a germ might march through my defenseless white blood cell count, I'd be there. With bells on. In person.

Today I had my one outing between chemo cycles: I felt well enough to go talk to people at a safe distance at a Haitian art sale. Fortunately it wasn't crowded, or highly peopled, as The Artist and I say. We prefer lightly peopled or none at all. Odd that we live in New York, but there you have it. We like our conveniences more.

One of my current ones is that the chemo lounge is five minutes by cab from my house. Couldn't find that in a small town. My friend outside of Buffalo has to drive an hour to take her mother to chemo. (Lymphoma is the disease her mom and I share.)

Would I talk about chemo time on FB? Not in this lifetime. I doubt more than six of my so-called friends would even care. FB has its place, especially when communicating with folks a generation younger than I, but it's not anything resembling a face-to-face interaction. Not even resembling an email.

Fifteen words or fewer: I am cranky as I write this. Social media? It seems more antisocial to me.

All cooped up with snow place to go

Has it snowed more this winter than last? I have no way to judge. Since my surgery, December 2, I haven't been out much at all. Since chemo began, I've been afraid of public petrie dishes. Most of the time, I don't notice -- but today, while it snowed and I couldn't go out, I felt like a little kid sick on a snow day -- a do-nothing day that I couldn't fully enjoy.

Instead, my mom was here: we toiled together in the kitchen, making comfort food from scratch. My comfort food -- not something she has ever eaten. I called it mac & cheese day, but neither of us had ever made a white sauce. It takes a village when we attempt domestic competence.

We made two phone calls to consult with my friend who gave me the recipe, my friend who is upstate taking care of her mom, who has also lymphoma. It is, apparently, the disease of the season. Her mom and mine are drinking buddies: she and I think it's cute, we who stay away from the bottle, for reasons too complex to detail here.

This winter, I am ill. Last winter, I met The Artist, with whom I am in love. Our anniversary -- that is, in real life, not via email or telephone, is January 29, a Thursday. I had picked the restaurant, my favorite French bistro not 100 steps from my home. It is where I had auditioned, so to speak, many a real life rendez-vous. La Boite closed suddenly in May last year. All I could think was, I hope I never have to go on another first date.

The Artist is sweet and witty and compassionate, and I am grateful beyond measure that she is in my life. This is a hard patch we are going through: no matter how "garden variety" my cancer may be considered, she is stuck going to work, and tending to me while I am home.

I am tired, and sometimes achy, but the largest part of my physical pain has been healing from the five-inch incision in my chest. Chemo has not, thus far, proved the tribulation that made me so nervous.

A winter snow- and germ-bound in my apartment, however, is making me twitchy. I cannot remember the last period of time I was Wonderland-bound for so many months. Last year, January was Alabama, for my niece's birthday; February, my belated JYA in Buenos Aires; and March, my two weeks down in Mexico.

This year, I travel by taxi to the oncologist, five minutes from my house. Last year the heat was turned low, but this year, it is not. This year, my house is awash in Purell, Kleenex, pain pills, and tranquilizers. The freezer is stocked with food other people have cooked. The Artist makes our dinners, each with a reduction sauce she improvises and that impresses me. My mom's friends, most of whom live outside of Wonderland, send flowers, chocolates, books, skin cream.

Most of my social life, except for The Artist, TBF, and one of The Three Sisters, is conducted via electronic means. Certainly it is the season for Facebook. Alas, it is not the season for great writing, given the limits of my concentration if not any other impediments. It is mostly a time for arts and crafts, and I feel kinship with my 5-year-old neighbor, who received finger paints for her birthday.

I have paint (by numbers), coloring books, crayons, glitter crayons, markers, glitter, modeling and baking clay, and a needlepoint kit. I have also designed my own tiara, courtesy of The Artist's dabbling in the children's crafts department at a local store. She herself paints for real, and creates beautiful photographs. What I hope I do with words, she succeeds with art.

One of the Three Sisters has been down this road before: I am her fourth patient in the chemo wars. She keeps me hydrated and laughing and is great, loving company. We have known each other for 25 years, and we are family. We are better than family: we don't have the built-in stress of childhood competition and don't share buttons installed by the same mother.

Most winters I spend time in bathing suits. Now, I wonder how the sun will affect my scars, and whether my sun days are over. I dress oddly, as if in the throws of menopause: hot, cold, hot, cold: my internal thermostat is askew.

I used to wear flannel nightgowns; now my nighttime attire is improvised layered pajamas. Cotton elasticized-waist pants; a long-sleeved, tunic-length cotton T-shirt; a button-down, flannel shirt worn open to be taken on and off as needed; athletic socks; and a cotton cap, to cover my head. The cap is striped; the shirt is plaid, but mismatched clothing seems symbolic.

As a teenager, per my journals, I hoped my life would look seamless, that it would not be all manner of patchwork. Patchwork, however, is the story of how it goes, never more so than now.

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.