Tuesday, August 30, 2016

Don't Plan While on Paclitaxel (OR: It's Sleeping Zombie Day)

I brought a stack of student essays to read and grade as the nurse adjusted the IV line and set up the Paclitaxel drip. And that other little plastic package, the anti-allergenic. Surely the third time would be easier than the second time, the second time having been less easy than the first. I'd even been back to take a ballet class in between chemo treatments. Toward the end of a treatment I feel almost normal, just in time for the upcoming dose to render me Sleeping Zombie.
But my eyelids got heavier and out I conked, as if someone had just clocked me. I didn't see stars and nothing hurt, but I drifted into oblivion. So much so that when the nurse came in and I was vaguely staring around, not quite there, I jumped when she asked a question. 
As soon as I got home I was determined to do laundry. I got it in the machine, put in the laundry soap, closed the door--and forgot, as I was to discover only several hours later, than I hadn't started the machine. 
Upstairs I went to lie down on the couch for "just a minute." When my teenager asked if I minded whether he did his clarinet practice I said "Okay," or "go ahead," and apparently went right back to sleep.
"You slept through my clarinet practice, Mom," he said. "Wow. I was really loud, too."
Here I am, five hours later, still a little on the groggy side. Queen of the Zombies. 

Wednesday, August 24, 2016

Why You'd Rather Have Dr. Asperger's Syndrome than Dr. Perfect Bedside Manner

Once upon a time I had a mammogram--and was reassured, as I always had been, until now. Dr. Perfect Bedside Manner never rushed me. She had my results in her hand and was smiling as I walked in. She shook my hand, offered me a seat, explained why I was just fine--"I have nothing but good news for you!"--and, after exchanging a pleasantry or two about my very good gynecologist, who recommended me, let me go. But then two months later I found a lump--technically a swollen lymph node--and the circus of my treatment--tests, tests, test, chemotherapy, baldness, old ladyhoodness, and other distressing symptoms, began.
To my gynecologist's surprise, Dr. Perfect Bedside Manner was not assigned to my case. The hospital has a team, and normally Dr. PBM is on it, and I guess they must have thought--no one offered an explanation--maybe they thought I would sue--that I would not be comfortable with a doctor who had failed me. It's a common failure, misreading a mammogram, but how would they know that I knew that? In any case, I was assigned Dr. Asperger's Syndrome, who walks like a Hollywood Frankenstein and has the bedside manner of a snail. His expression--that of someone who hasn't had enough sleep and needs a bathroom--never seems to change. 
Since the whole idea of chemotherapy, to shrink the lump before surgery, seemed not to be working--because I could feel the round, hard, lump after four rounds of epirubicin and cyclophosphamide--I made an appointment with him. If side effects were all I was getting out of chemo, I wanted out.  
Dr. Asperger's Syndrome, with none of the personal charm of Dr. Perfect Bedside manner, has other qualities. What he lacks in ordinary everyday politeness he makes up for in competence. He is the doctor who knows how to identify that single snowflake, the one he seeks, in a blizzard. 
Not long before my appointment I was waiting to speak to a receptionist when he happened to come down the hall. I'd met him twice before, so smiled and waved. He moved robotically down the hall, not seeming to see me. 
I was waiting in the same place the day I had my appointment. He strode down the hall toward the receptionist. This time I got a vague, startled nod as he continued walking. The receptionist guided us down the hall to an office and unlocked it; he left and let her take me in and question me about my insurance. By this time I was bald and wearing my wig. He'd met me before I lost my hair, so I wondered if perhaps he did not recognize me in my new blond haystack. About which he said nothing. He returned and asked something--perhaps "How are you" in such a flat affect that I felt nervous. I flipped off my wig, said, "Well, now we have the same haircut," and he didn't laugh, although actually we do sport the same military buzz cut. Equally gray, too. He stared intently at my offending scalp for a moment, as if calculating. After the interview, I imagined he was thinking, "She is not completely bald, therefore . . . ." or "Her stubbles seem exactly a quarter of a millimeter long, which indicates . . . ." He turned, scribbled something on a clipboard, and set up the ultrasound. I lay on the table as he slimed me with gel and started moving the arm of the ultrasound around my breast. I had questions and started asking them, but when I glanced at him, I desisted. He was leaning into the screen with an intensity that made me want to stop breathing. I thought the sound of my respiration would break his concentration. His eyes were wide and bugged out. "Speaking up now, " I told myself, "Would be like asking a man in the throes of a very good orgasm whether he'd remembered to pick up his shirts at the dry cleaner." 
Only when Dr. Asperger's Syndrome had completed his exam and tossed me a towel with which to wipe off the goo did I express my concern that the lump seemed bigger. The one at the edge of my breast.
"No, no! We'll take that one out later. The other one's smaller." He smiled in a cheery fashion and walked out. I thought of Lurch, the Addams family butler.
But I'm much happier with Dr. Asperger's Syndrome than Dr. Sweet Bedside Manner, who missed the diagnosis and left me unaware and untreated for two long months. 


Saturday, August 20, 2016

The Wigless Cancer Mom Answers the Door

Wigs, as a rule, aren't comfortable. But ever since I lost the little cotton skullcap that goes under mine, the thing's surprisingly more comfortable--my sharp gray hair stubbles function like velcro. Still, I don't wear my wig at home. If I know the Amazon delivery guy is ringing the doorbell, I quickly don one of my Smurf caps. If it's just one of my children, I don't. They've gotten used to the sight of Mom-with-military-buzz. 
Somehow, I thought one of my kids had forgotten his or her key when I answered the door one evening around six. There stood one of my older son's friends, his eyebrows suddenly up, eyes popping, mouth in a classic "O." No doubt about it. The kid was in shock. So I was, actually, having made feeble plans to keep breast cancer a secret.
"Oh," I said. Then, overly brightly, "Hello!" In came the kid. As I directed him to my son, I explained, "This is my chemotherapy head, but don't tell anyone."
"It's--ahhh, okay!" gasped the kid.
"Normally, I wear a wig."
"It's--really--okay!" he added.
Today we're visiting friends in Bavaria, and I woke up in the middle of the night to use the facilities. Unexpectedly, the girlfriend of our host's son was emerging from the bathroom just as I entered.
"Oh, hello! It's just me," I said with manic cheer.
She smiled. Girls understand better, without having things explained.

Wednesday, August 17, 2016

Six Paclitaxel Tips for Breast Cancer Gals

If you've already endured four cycles of epirubicin ("The red devil"--it turns your pee red, or rather neon-popsicle orange) and its sidekick, the equally devilish cyclophosphamide, you may feel teary and sleepless upon arriving for your first of twelve weekly doses of Paclitaxel (aka Taxol in the USA). But my experience has relieved me. Paclitaxel's no picnic, but does not cause the completely flattening effects of the first cycle of chemo. I felt sleepy, because of the stuff they add to prevent an allergic reaction, but had no other side effects besides a slightly flushed face. I'm not back to my usual energy levels, but can imagine returning to ballet and tap classes now.

Six tips for Paclitaxel:

(1)You won't feel that bad during the treatment, but toward the end you'll start to feel drowsy. A friend who had been through the whole 12 weeks of Paclitaxel called that phase of treatment "The sleepy time." Some women go comatose. Why? Apart from the obvious, that chemo wears you out? They give you an anti-allergenic whose side effect is . . .you guessed it . . .fatigue.

(2) Which is why every site dealing with Paclitaxel advises you "not to operate heavy machinery." I never do. Even when I don't have cancer.

(3) The facial flush and forgetfulness will still be there. But you're used to those by now, right?

(4) Seems like the worst side effects--the extreme fatigue, the body or bone aches, come a few days after the treatment. Just when you were feeling fine after the epi-and-cylo. But you still don't feel quite as bad.

(5) Some websites tell you not to drink coffee. But my doctor says coffee is okay. Since coffee would be much harder for me to give up than red wine, I'm drinking my morning coffee. With sugar, too. 

(6) Ice packs on your hands and feet help prevent neuropathy (numbness in the hands and feet). Bring along thick socks to wear on your feet. The nurses usually provide the cold packs. When your fingers start to burn with the cold, take them out for a few moments. If you can tolerate at least 20 minutes (I did 40, with a break in between) you may avoid the numbness.

P.S. Except around the brain, of course . . . .

Friday, August 12, 2016

Six Tips For Breast Cancer Chemo Patients

(1)  You get blood drawn so frequently—in my case weekly—that you’ll forget to press hard on the spot the needle went in. You’ll want to just run out of there, and the nurse will forget to remind you to press that spot. Press it. Otherwise you get purple and green bruises all down your arm.
(2)  Find a diet you like and follow it—I’m going for a version of the low-glycemic diet, detailed elsewhere on this blog as the “Mom Belly Diet.” Basically, you don’t eat carbs in the evening—no rice, no pasta, no bread, no potatoes, no pizza crust—so that you lose, or at least don’t gain. Why? Because women with breast cancer don’t waste away, even when they’re dying—they puff up. It’s the steroids but it’s also overeating. So find and follow some sensible diet you like. You might even invest in an anti-cancer cookbook. I just ordered this one, Rebecca Katz’s The Cancer-Fighting Kitchen: Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery.
(3)  Remember the latest on anti-cancer foods—the three “Cs”: coffee, cabbage, and cumin. They’re all supposed to be hostile to cancer. So enjoy them.
(4)  You’ll also find websites telling you differently. Ask your doctors if the inconsistencies drive you nuts, and remember that you’ll get different answers from different doctors.
(5)  Think about, but don’t go nuts over, sugar. There’s a theory that going off the stuff starves cancer cells. My doctors think your body is going to have some sugar in it no matter what you eat. I usually restrict sugar to breakfast, when I have a tablespoon of it in my coffee or my oatmeal, or I have jam on my cornbread or muffin. Both of which have a bit of sugar in them.
(6)  Chemotherapy does not go on forever. Four down, twelve to go, I tell myself. After next time, Five down, eleven to go.

Wednesday, August 10, 2016

Re-routing the Republican Candidate

Now, my friends, is the time for quiet persuasion. I am not the person to do this. I get hysterical and my voice squeaks when I mention the name of the Republican presidential candidate, and do not think I can be a particularly good influence in person. I did call my sanest cousin in the great state of North Carolina, much in danger of falling to the enemy, and she reassured me that she hated the guy--but then admitted: "I know folks who are voting for him." Their reasons? Can one talk about reasons when one is talking about teenagers who give birth to cocaine-addicted babies, bearded mountain men whose closest relationships are formed with wild turkeys, semi-literate roofers, folks who are generally down and out, whose next paycheck is not always secure, whose diet promotes high blood pressure and is washed down with too much corn whiskey? Folks who are ready to listen to anyone who says, "You're good. Get rid of _________________ (fill in the blank with the ethnicity or religion of your choice) and your life will be good." Call it populism, call it demagoguery, but those who think have to learn to speak in just the clear, simple style of the Republican presidential candidate--but to send messages of love and inclusiveness instead of the ones that he is sending. Churches, I call on you. Pastors, I call on you. Preach love now, preach hope now, preach "you can be good" now, before we all go down in flames. And let's re-route that toupée-flipping candidate back to the business world, where one hopes he will do less harm. Networks, news media: stop mentioning his name. He knows all news is publicity. Please. Just stop mentioning his name. Refer to him as "the candidate" if you must talk about him at all. The less you cover him, the better. Except in one area: whenever he can be made to look ridiculous--not outrageous or racist or narcissistic or impulsive or inarticulate, though he is all of the above--but really laughably ridiculous, and this is more than removing that awful toupée--then showcase this. Showcase what would make anyone, including his fans, laugh. Remember your Harry Potter: "Riddikulus!" and a wave of the wand, and the fear-indusing boggart vanishes. Think of the Republican candidate as someone to be laughed at. CNN, BBC, if you must say anything about him, and I'd rather you did not, you should be laughing at him.

Tuesday, August 9, 2016

Olympic Glories: Revisiting Chariots of Fire

Piles of garbage in the Rio bay, on the Rio shore, and in the athletes' veins--I wanted to get away from the real Olympics for a bit, find some more pleasant version of same, and the great escape that came to mind was Chariots of Fire, the 1981 Academy-award winning drama about the 1924 Olympics, about brotherhood, about teamwork: gorgeous young men running down the beach in a pack, the Scottish athlete missionary, Erik Liddell, burr-ing: "When I run, I feel His pleasure." (Make that "rohnn." Mayke that "play-zoor.") Liddell's disapproving missionary sister saying, "You're running so much you've no time (ti-yum!) to stand still!" She thinks running removes him from God. He knows God "made me fast!"
Oh, do I hear the beginnings of my Scots Presbyterian ancestors, that ragtag crew escaping the Highlands, probably slightly ahead of Bonnie Prince Charlie, and hoofing it from Pennsylvania to the Carolinas. The clan of Scots highlanders that became mercenary soldiers for King William of Orange, sometime around the Glorious Revolution.
Until the 1580s, when Mary, Queen of Scots got beheaded, my family crouched in caves, ripping apart stolen sheep with their bare hands, lifting out the guts to make haggis--which got bolted down with homemade mead--and hiding the remains before the Laird of the manor caught them. The Laird often caught them anyway, stringing up the men before disemboweling them and then publicly exercising his right to prima nocta, secunda nocte,  tertia nocte, and all the other noctes he wanted, with our clans' women. Meanwhile, my ancestors spent their days trying to get wheat to grow out of rocks, slaughtering opposing clans and swimming upstream ahead of the salmon. They passed their Sundays at the local kirk, listening to sermons on how slowly and completely we would all burn in hell. When the chance to fight religious wars for King William of Orange arose, these hardy Scotsmen girded their loins, packed an extra sporran and ghillies, fought like the wild highlanders they were, and when the wars were all over, sat damply on their kilts in steerage on their way to the colonies. The few offspring that, generations later, achieved prominence, demonstrated talent for warlike deals with Hessians during the American revolution.
Nostalgic for this idealistic, though uncomfortable past, I watch the film's English lord graciously ceding his right to run to the principled Liddell, who won't run on a Sunday. The Jewish athlete getting dissed for being a Jew, running a race he's lost previously to Liddell, and shaking hands with him. 
Respect! Honor! No Doping, apart from beer! A simpler life and training, during which athletes appeared to be doing those funny 1950s Royal Canadian Air Force drills that in real life knock your knees out. But these men all got along so well, driven by honor and ideals and love.
"See, kids," I said, as Liddell preached to a crowd of working-class Scots drenched in torrential rains after booking it around a hilly, gray landscape, "That's where your ancestors came from! Those Scots Presbyterians!"
They'd only heard about the Bavarian Catholics, so were impressed. Wood and stone churches with plain wooden benches, stark wooden crosses. A far cry from those gorgeous Baroque cupids that adorn the cathedral in Bavaria. 
We all ate popcorn, basked in the spirit of the Olympics, and felt refreshed--ready to turn to the real thing in the morning. 

Saturday, August 6, 2016

Olympic Openings: Creepy-Crawlies or Star Wars?

As we sacked out around the TV this morning, eating blueberry corn muffins and watching the strange crawling monsters slide across the Olympic stage in Rio, my husband asked, "Are those Star Wars ships?"
I put down my coffee cup and watched a jointed mechanical leg clip across the stage, green streamers and lights flickering.
"It's a praying mantis from the jungle," I said. 
Amazonian warriors were dancing to something that only Busby Berkeley could have choreographed.
"It's a spider!" said my daughter.
"They're getting the athletes prepared for what they'll find in their hotel rooms," said my son. 
On came the Portuguese conquerors, on came the slaves, feet clamped to blocks of stone. Meanwhile, outside the arena, the workers, the professors, the nurses, the doctors, who haven't been paid for four months, let their discontent be known. Meanwhile, the German rowing team is told not to dip their hands in the waters as they row, nor allow a drop of that water to enter their mouths. The pink flamingos observing the debris float by, the bloated dead fish on the beach, have seen it all and like Alice in Wonderland, remain unperturbed. The whole story of the conquest and colonization of Brazil had played out on the Olympic stage at the opening ceremonies--now the question remains: what will the people of Brazil take away from this particular pageant and contest?