Sunday, October 12, 2014

Eid Mubarak

It is Eid and I’ve just cooked up a storm of goat-related dishes.  The Family had tried to dissuade me but I am high on Dexamethasone, that Father of Steroids. So high, in fact, that red clownish circles have formed on my cheeks. I am walking too fast, talking too fast, my husband complains. I am giving him a headache.

This Dexamethasone is both a friend and a foe. Merely an hour after it drips palely into my vein, I become Invincible. I have the most prolific ideas, the most ravenous appetite. I can wade through floods to catch a Daewoo bus. I’m sure I can actually lift the Daewoo bus if only someone would just let me try. And I could eat the bus, I’m that hungry.

But that night, I can’t sleep. When I do, I wake up an hour later with a start, my brain anxiously telling me there are Things I’ve forgotten to do that I must do, must do now, what are they, why can’t I remember, why can I hear my heart beating, is this a panic attack? The speed at which my brain thinks and frets begins to tire me but I can’t calm it down. Forty-eight super-woman hours later, all systems in my body suddenly slow and issue an announcement, loud and clear. “Dexamethasone has made like Elvis and left the building.”

So just like that, I crash. Pain creeps back into my consciousness. I can’t sit up to braid my daughter’s hair for school. A trip to the bathroom wipes me out. Without the crutch of Dexamethasone to give me fake power, I am left alone to face the chemo and I sleep…and weep. (Depression is part of steroid withdrawal symptoms.) I say awful things. I yell at our houseboy in a way I never have. Then I feel remorse over my behavior and weep some more. During my healthy days, my husband once compared my eyes to Salman Rushdie’s (he wins no points for romantic flattery) but after a ton of weeping, their lash-less, eyebrow-less glory makes me reach new heights of attractiveness. Looking in the mirror triggers even more Depression. The cycle is so very vicious.

These last twelve cycles of chemo weren’t supposed to be as bad as the first twelve weeks, and indeed, this new drug Pacitaxil started off slow and sneaky. But its effect has been what the doctor calls ‘cumulative’ and over time it has rooted itself steadily in my body until…

Back to Eid and the Family seated around the goat laden dinner table. As I pick up a fork, I noticed a nice crimson rash spread slowly, like multiple columns of an angry army of ants. It sprawls across the web between my thumb and index finger. I glance with fear at my mother at the same time that I pull my hand firmly away from her view. The rash does not scare me half as much as her potential reaction to it: “I told you not to touch raw gosht,” I can hear her scream. “Who asked you to go into the kitchen and start cooking brain masala and kaleji!”

I retreat tactfully to the privacy of the bathroom where I look carefully at the slowly invading rash. I am terrified it is an infection. I look at the multiple cuts and scrapes across my hand and wonder what bakra germs could have entered through them. This can be catastrophic. From the bathroom, I call my sister the doctor.

“Is it symmetrical?” she wants to know.

“What?”

“If you have it on your left thumb and palm, do you also see it on your right thumb and palm?” Lo and behold, she has a point. When spread out together, my hands look like twin wings of a very blotchy butterfly, symmetrical rash pattern on each. “It is a drug reaction,” she confirms. “A mild one. It isn’t an infection.”

It does not feel mild to me. Beneath the redness, I can actually see the dark inkiness that I have now come to recognize as the chemo medicine. It is the same inkiness that has threaded onto my tongue and into my nails in previous weeks. “It stings and burns,” I whine.

“As long as it doesn’t itch,” she says, “…not an infection. It should go away in a day or two. You can put a mild hydrocortisone cream on it if you’re worried.” I thank her with a sniff. Much as I am reassured that I don’t have anthrax or something worse, I am also slightly peeved at the dismissiveness of her attitude. Sibling doctors, hmph.

Three days later, I show the remains of the rash to my oncologist. He seems similarly unimpressed. Then he asks me about nerve damage in my fingers and toes.

“Can you feel this?” he asks, prodding my fingertips with a pen.

“Sort of,” I confess. “But my fingertips are constantly numb and I tell him this. “In two of my toes I actually have no feeling left.”

My oncologist peers at me over his glasses and very nonchalantly announces, “I think we won’t do your last round of Pacitaxil. We’ll just continue with your Herceptin.”

I can’t believe what I’m hearing. Did he actually, actually just say that he is canceling my final round of chemo? No more steroid-induced hysteria? No more crashing and semi-dying afterwards? After twenty-three excruciating weeks of relentless chemotherapy, is he announcing that finally, finally, I am done?

That’s right folks. I’m typing furiously from a car that has just crossed Bhera and is taking me home. I did get my Herceptin this morning and will continue to get it until July 2015. But as for the hard-core chemotherapy? I’m done.

Then I notice the black fuzz on my keyboard. It is all over my laptop, my hands and when I rub my head, I find, that is where it is emanating from. It’s as if the chemo, in a final farewell, has given me a slight kick in the butt to say, “Don’t forget me, I’m still here.” The doctor did warn me it will continue giving slight kicks for some months yet, that the drugs won’t exit my system so quickly.

But I can take that. I open a Dairy Milk Bubbly and begin munching happily. No chemo drugs for me next week. Or, if God is very kind to me, ever again.

Eid has come for Hareem.






Wednesday, August 6, 2014

Running the Nine Miles

Rains pounds the night streets in Lahore. But inside the chemotherapy bay in Shaukat Khanum, counting the drops of Herceptin that dribble into the pipe connected to my port-a-cath, I can’t tell what the weather is like outside. The air-conditioning is strong but I’m sweating. The man in the bed next to mine vomits at five-minute intervals. After a while, the perfectly healthy attendant next to him begins to vomit also. I plug my ears against their retching and hum, hum, hum.

After spending about 18 hours at Shaukat Khanum Hospital yesterday, I am in a sober mood today. This sobriety is not brought on by my own condition. I, after all, am receiving the best care, have the best support system, am relatively young…and scans reveal that my tumor is almost gone. Another eight rounds of chemo and I will be ready for surgery and radiation.

Plus, my best friends have bought me a wig that make me want to don a red dress and stand over an air vent—ah the confidence of hair. In my life, all is smooth. All is good.

Yes, I say ‘smooth’ and ‘good’ despite a life of difficult, weekly chemotherapy. It is true that black powder falls on my pillow 3 days after each chemo shot...baby hair that tries resiliently to regrow and is shot down by Taxol. It is true that my chemo is still routinely delayed because of low white blood cells counts. It is true that Digestion of Food has become a big deal in my life (despite which, with mysterious irony, I haven’t become thin. Just another of Life’s little injustices.)

But Suffering gives you such a new lens.

At Shaukat Khanum, I smile at that handsome fourteen-year-old from Hangu without a leg, as he leans against his crutch to photograph the peacocks that dance for him in the hospital courtyard. He raises a hand and grins back.

I watch the tiny girl from interior Sindh rock with violent enthusiasm on the rocking-horse in the modest children’s room as she gazes at Nickelodeon on TV through her eye-patch. I can tell that eye-patch or no, she is loving this moment.

And then, as I go back to that initial dreaded place, the women’s screening room for another scan, I see other women who’ve come here for the first time. I watch the tasbeehs swirling in rapid rotation. I listen to stories of the “lump”, when where and how they found it. Some of them will be stamped ‘benign’. Others will have a tougher road.

They all look at my missing eyebrows, they note the familiar way the nurses talk to me and they make no effort to hide that they’re staring. The reserved Islamabadi in me has never gotten used to frank Lahori up-down-up appraisals and I shrink into myself. But they want to initiate conversation, they bombard me with questions about What Will Happen Next? To them, I am a cancer veteran. There are grandmas and unmarried girls, girls in tights and thong sandals as well as women in burkas. At first I resent their voyeuristic interest. But then (because I think I’ve become a slightly kinder person) I thaw and tell them. “It isn’t the end of the world. You’re not going to die. You’ve come to a good place for care.”
 
Shaukat Khanum, in fact, is a great place for care. Perhaps not perfect, but I’m impressed. Impressed by the cost and quality of food in the cafeteria. Impressed by the way everyone falls into a queue. Impressed that the boy from Hangu (who can’t pay) is treated the same as me (who can pay).


I remember Atif telling me how he would run the nine-mile Army test. “You just throw your head down and stop thinking, stop feeling, you keep running.” 

I’m running these miles. And it’s all good.  

My Confidence lay in my Eyebrows

I can cover the head, mask the blue nails under polish, hide the mouth sores. But I can’t paint in new eyebrows without feeling ridiculous. It is Chand Raat, and I am hiding under a ghoongat at Shaheen Chemist, terrified that I will meet everyone I know and that they will see how apalling I look without eyebrows. I do run into the parent of an old student and I see him straining to recognize me. I do an about-turn and flee from the shop.

It is a moment of very low self-confidence.

I impose solitary confinement and limit my already limited social life. I don’t want to be seen.

A few days later, Atif makes me drive a motorbike around our neighbourhood, despite my protests that I will fall and die. I don’t fall and I don’t die, but as I accelerate, my dupatta sort of flies back off my head, revealing its full ganja glory to security guards and pedestrians alike. Even at my speed, I see the dropping jaws, the freezing of a step mid-stride.

It makes me laugh. And it restores confidence, somewhat. I meet some friends again, I go out and life isn’t so bad.



Saturday, June 28, 2014

After the Fourth Round

I haven’t blogged in a while because I know no-one wants to hear me complain about a long (albeit fascinating) array of chemotherapy side effects. The update is that I’ve completed four rounds of doxorubicin and cyclophosphamide. Just typing their names is painful (and their spellings don’t help).

Between rounds, I’ve had shots of Filgrastim to flog the bone marrow into making white blood cells. These have been worse than the chemo itself (think excruciating bone pain).

How have these four rounds been? Imagine me facing off a heavyweight in a boxing ring, thinking, “I can do this!” After the first volley of punches to my face, I look in the mirror and think, “Just a couple of bruises and a black eye. Boxing’s not so hard!”

After the second volley of punches, I think, “So he broke my nose and split my lip? So what? I’m still standing.” I still have the sense of humor to take a couple of brag-photos of the scars to prove I did this! I can do this! I swipe-punch the air to demonstrate my bravado.

After Round Three, I stop talking (and start grunting in agony instead). There’s no deflecting these punches.

And at the end of Round Four, I’ve had the stuffing pretty much kicked out of me. There are no wisecracks left.

In ten days, I’ll start a new chemotherapy drug. Rumor has it that it isn’t as bad as the two I’ve had before. I will also begin a year’s treatment with Herceptin (that uber-expensive drug. (When life-saving drugs cost as much as a plot in Defense, you know some pharmaceutical company is going to Hell.)

At the moment, my head feels like it is full of gasoline. My saliva is so thick that I gag at the merest swallow. My skin frays at the gentlest scratch. My nails are blue. I have a hacking cough and no voice left. I know I should smile for the benefit of people who are loving and caring for me through this. But I have few smiles left. Most of my eyebrows and eyelashes have fallen off and this is not a flattering look for me. (I look like a serial killer and Sorry, this time, you get no photo.)

A friend advised me to invest in a box of fake eyelashes. How do I explain? This new look can’t be lip-sticked away. That would be like trying to garnish a rotting plate of food with fresh parsley. Yes, I know that’s weak but it is the best analogy I can come up with, I’m not trying too hard ok?

I caught my daughter wistfully swiping through old photos of me on her phone the other day, the pre-cancer days, when my grins were wide. I want to say that I will become like that again. But it is far more comforting to believe what my husband tells me. “You were such a bala before,” he shudders. “You are going to come out of this an even bigger bala.”


That’s right. Watch out, world. What a badass survivor I will be.

Monday, May 26, 2014

The Best Days

Even though I think I look quite nice, my decision to put up a bald cancer-selfie has been received with horror and vigorously shaking heads by those who love me most. "Don't do it," I'm told. "Tumharay samnay log kuch nahin kahenge. Lekin tumhare peeche…"

I remember when I did care about what people said behind my back. I find it matters a little less now. (Thanks, Cancer?) I remember how I googled for images of bald women when I was first diagnosed.

"You'll look just like Sinead O'Connor" was one of the most useless reassurances I received. "Natalie Portman" is another favorite pin-up for girls with cancer. Both too white to be of comfort to me. I don't have those caucasian features. If Sinead or Natalie had hair, they'd look nothing like me."

I tried googling bald South-Asian women. I found nothing. Ok, correction: I found some photo-shopped images of a bald Aishwarya Rai and a bald Rani Mukherjee, complete with fake eyelashes and Bollywood Shashkay make-up. People had written Ha Ha Ha type comments beneath these images (Understandable. They were pretty funny). I found a horrific story of Indian women whose hair was forcefully shaved and sold to Western wig-makers for money that they never got any share of. Those photos were heartbreaking. And I saw a story about Abid Boxer, a notorious policeman who shaved off girlfriend Nargis (Multan stage-drama mujra queen)'s hair to punish her for ending their affair.

In other words, no positive images of bald South-Asian women out there. Baldness in our women clearly means shame and ridicule or hilarity.

But the other night, I was at a restaurant in Islamabad. Seated at the open-air table were two very loud men. One of them had thrown back his head and was laughing heartily at something another one had said. His shirt was white, as were his teeth--a nice contrast to the tan of his skin. Both their heads were baldly smooth, like a baby's. They were as evenly tanned as the rest of their faces. Unlike my own pale tind, theirs had clearly seen the light of day. I scratched my itchy head under the chemo beanie in the May heat and felt envy, raw plain envy, course through me.

I was not brave enough to whip off my scarf and flash my ganj that day. I am not brave enough, even now, to whip off my scarf and see "that" expression in friends' and family's eyes before they can hide it from me. But it isn't entirely our fault, is it, when baldness in women is so rare, so hidden? I have the same confused feeling about this that I did when as a young girl I first noticed skimpily-clad 'extras' cling to a fully suited Julio Iglesias as he sang 'Amor' on Solid Gold. The rules for women are so yucky compared to the licenses that men have.

I worry that this bathroom selfie will haunt me, that the internet will preserve this photo when, years later, who knows, I may have changed my mind about being this public about my health and life. I hope I never feel that shame.

My husband complains I give him no credit. Well Atif Khan's the one who lovingly shaved my head--and continues to level the falling stubble post-chemo. He is the Best (and he knows it).
The best days are the days when you forget you have cancer. The days when you watch movies, and cook, and gossip, and meet your friends again, and laugh with your family. Yes, there are such days and I am so thankful for them. They come right before the next chemo…and you wonder if they'll ever come again.

They always do.

Trust Your Doc—Vs.—Be Your Own Doc

Just after the oncologist tells me that she is quitting Shaukat Khanum and might be leaving the country, she adds something I will always thank her for. “Shaukat Khanum is a very busy place. Sometimes…we miss things. The best patients are the informed patients, the proactive ones—they help us treat them.”

This is why I will miss Narjis Muzaffar, my (ex-)oncologist. Most of the doctors I’ve met in my life are harridans who call you “bibi”, brush you aside, are too busy to look you in the eye or even listen when you count out the symptoms and questions. I've had my share of stood-up appointments and misdiagnoses. Shaukat Khanum has been exceptional but even at this heaven among Pakistani hospitals, not all doctors are created in the mold of Narjis. And many patients—products of our traditional schools—are quietly compliant, reverential, afraid to ask a question.

My own husband begs me to be a bit compliant and reverential. “Trust your doctor,” he reminds me whenever we’re on our way to any appointment. What he means to say is “Please don’t create a scene and storm out of the clinic.” Yes, this has happened a few times in past years. 

“Don’t begin speaking until the doctor has had her say. Wait till she asks you if you have any questions,” my sister (a doctor herself) has warned me.

I understand their concerns. I’ve embarrassed them with my behavior in doctors’ clinics before. I’ve never been a compliant patient. But especially in the case of cancer, I realize that might be a good thing.

Let me explain. Hospital staff don’t have the time to hold your hand and walk you through the details of your treatment. They have too many patients—just stand at the reception counter, walk through their corridors, peek into the chemotherapy bay at any hour, and you’ll see what I mean. Throngs. Multitudes. From every Pakistani province and city imaginable, even Kabul.

At best, Shaukat Khanum staff has time to create your file, plop you onto an assembly line and hand you a fairly cookie cutter treatment regime, straight out of the NHS policy books. (And I’m incredibly grateful for the efficiency with which they do this—it’s no easy feat, considering the sheer volume of patients.)

But cancer is no simple ailment. It takes months to treat. And you’re not in the care of any one doctor. Your surgeon, oncologist, radiologist, pathologist—are different people. Your cancer may feel very unique to you, but at SKMT, my dear, you are a file number.

So I listen to my husband and promise to ‘trust’ my doctors. I nod when he reminds me I don’t have the MBBS degree or their experience. But I have a rule of my own.

I am my own doctor.

This doesn’t mean that I prescribe my own medication or ignore doctors’ advice. It does not mean that I presume to know more about cancer than those who have spent a lifetime learning and treating it. It does not mean I’ve ditched chemo in favour of soursop (by the way that fruit tasted awful, it is impossible to get an endless fresh supply in Islamabad no matter how much I pay. Please stop sending me links that tout its benefits. It’s too late, my chemo has started. You, on the other hand, should certainly eat it to prevent cancer. I’m not even being flippant.)

Here’s what being my own doctor does mean:

1.     Understanding my disease, learning new vocabulary and concepts: neutropenia, nadir, neutrophil, ductal, metastasis, port-a-cath, dozorubicin…I have a brand new cancer dictionary filed into my brain. When the doctor speaks, I need to know what he/she is saying. I need to have my homework done, to understand what is happening to me.

2.     Managing my cancer ‘file’. Updating my chemo calendar, creating a finances section to store various invoices, lining up pathology reports in chronological order, making notes. Knowing when the next echo-cardiogram is due. Organization is critical.

3.     Researching my disease and the next steps. Lumpectomy or Mastectomy? (I know what my doctor wants to do but is she right? I have a choice in this.) Should I get a BRCA test done? What made Angelina hack off her girls? What is the deal with recurrence? What do the blogs say? What do the scars look like? Google image—Ouch. How do I feel about all this? Mentally prepare yourself, girl. This is your battle. At the end of the day, you’re alone with your body.

4. Double-checking everything and asking lots of questions. 

I understand the dangers all this ‘being-your-own-doctor’ poses. It means paranoia, second guessing the doctor’s decisions, sleepless nights—after all, the more one knows, the more one frets. At some point, neither my doctor nor I have control nor complete understanding. The cancer may come back within six months of an ‘all-clear’. That mastectomy may have been totally unnecessary. Reconstruction may be a huge pain in the ass that I could have done without. Despite my best effort at vigilance, things may not be perfect. So I am advocating balance here.

Balance, to me, means this: On the one hand, the “doctor” has a role in this treatment. On the other hand, “I” have a role in this treatment.

But the fulcrum of this see-saw is God (Or Fate or Karma or whatever name your assign Him). He begins where we all end and there’s nothing we can do about that but accept it.