Friday, December 31, 2010

From My Sis

Wednesday, December 15, 2010

It Only Takes Two Minutes

A woman named Judy called and left me a message. She said she's the nurse practitioner for Dr. Asrari, the radiation oncologist who I met with at Johns Hopkins. Dr. Asrari just wanted to check in and see how I was feeling she said. I have a thing for Judys, so I called her back, of course. We talked for a few minutes about chemo, how I'm feeling pretty great – all things considered – Neulasta and the nasty flu aches. Judy explained that my body thinks it's fighting off an infection when I get the white-blood-cell skyrocketer, hence the flu-like symptoms. She said that's no good and I should try taking Claritin a day or two before the injection. I need to ask about this tomorrow when I go in for my CDC (complete blood count). If I can alleviate the Neulasta nasties, I'll be good to go. Yippee!

Dr. Asrari holds a special place in my healing heart. When I met with the team of doctors at Johns Hopkins, every single one of them made me feel encouraged, inspired, motivated, and like there wasn't a chance in hell that I won't get well. My shortest visit was with Dr. Asrari, not as in short in stature, although we both are, so it was literally a short visit, but we only met for a few minutes. The last thing she said to me was this, "You are brave woman. I see it in your eyes. You fight. You be okay." (She's Iranian, and beautiful – like every other Iranian woman I've met. What's up with that?) Those words have become my mantra, and I think of them everyday, and sometimes more. Fifteen words and two minutes that might have changed my life, saved my life, simply by giving me strength, confidence, hope, faith. I am certain she knows what she's talking about, and I believe that God asked her to say those words to me, knowing that I needed to hear them at just that moment. It's remarkable the impact you can have on someone in under two minutes. Try it. Say something awesome to someone today. It might be just what they need to hear.

Beautiful, Terrible Life

Just last Wednesday I learned that one of my best friend's sister had cancer, stage IV. Only a few days earlier, she'd passed out from fluid that accumulated around her sick lungs and was admitted to the hospital only to learn her that her fate was quite bleak. Inoperable, untreatable. She received a short burst of radiation in an attempt to relieve the pain and discomfort in her chest. On Friday, she went to hospice care, and on Saturday, Maura Hanrahan Mahoney passed away peacefully surrounded by her friends and her amazing family.

I am selfish, and I am devastated. I knew Maura as a younger woman, in high school. So spirited, smiling, bright, possessing all the clich├ęs that those who die young seem to possess. The best of the best. The lives you can only imagine – living. She was a teacher, from an entire brood of teachers. All of her three siblings taught, following in the footsteps of their mother, who died too early and also from cancer.

I learned this soon after my diagnosis: There is a precipice, a very fragile one, between the dark and the light. And, in these past few days, I've been on the wrong side of the mountain.

Part of my despair comes from the sadness of my friend and the loss of his dear, dear sister. A 36-year-old woman with two young, beautiful daughters, with so much life, love, and laughter ahead.

But, part of my distress comes from knowing that that could have been me. Could still be me, in different terms. Mostly I'm disturbed that she didn't even get the chance to fight and didn't have time.

I remember when I was younger being posed a question: Would you rather be struck dead without any prior knowledge, or would you prefer to know the day and time that you would meet your fate? Fearing the difficulty of facing death and all that entails seemed to me too much to bear, and I chose the former. I would die unknowing. But, that was then. Time, precious time, has taken on new meaning for me. It is precarious, devilish, mysterious and fleeting, and I want every second I can get, and spent with the intention of a starving lion hunting its prey during a drought.

I have mourned the loss of Maura, but I can't stay there, in that sad pool of gray and lingering tightness and worry and red-eyed, stinging and blistering and burning. I have my own death to contend with, and I owe this to her. I fight for Maura. I win for Maura. And anyone else who has succumbed to this bastard of a disease. Fuck you, fuck you, fuck you.

Thursday, December 9, 2010

Lola Not Lookin' So Lovely

Wigs are very itchy, and hot, especially indoors with the heat crankin', like at my office at work. Maybe I'll become a scarf lady. I'm not ready yet, but soon perhaps. And, it looks a little jacked up here, don't you think? Ayy. Too much hair for such a wee head. They make petite wigs, but for some reason, they all resemble Kate Gosselin hair, and that's good for no one.

Motivation

NJ's birthday went off without a hitch. I was so nervous about how I'd feel after the Neulasta shot last Friday. I felt great, until about two days ago. I've got the aches. But, I have this little monster to keep me going.

Tuesday, December 7, 2010

Vanity

I've cried 3 times since my diagnosis. After the bad news from my doc, that was #1, if I count like 10 hours of crying as one. The second time was the big breakdown. And, third was yesterday when I realized I was embarrassed by my appearance for the first time, maybe ever – like, really embarrassed.

I heard Jon's voice coming up the stairs, and I felt nervous that he would walk into the bathroom and see my sad, skinny body with leftover sticky tape marks from needles in my arm, post-nursing, deflated boobies – which also by the way happen to be diseased – and my old-lady head with a few patchy stragglers left. This is why people shave their head entirely, to avoid this moment I thought. I look like I have cancer. My dark, thick eyebrows are getting sparse. I did not have to shave, however, but now I wish I had to. My former body, in all its glory, is gone forever I'm afraid.

I had just taken a bath. Lost hairs were floating around me in the water. I felt really, really alone. But, I remembered God. How could I have forgotten? The truth is, faith is new for me, relatively speaking. Sometimes I forget that I am not alone. Ever. What a comfort. Life without faith was a much lonelier place for me. I wrote once about how I wondered what my life would have looked life if I'd had faith as a younger woman. Quite different I imagine. But then where would I have ended up? Not here. And, here is good.

Now I have a new body, an amazing, beautiful machine equipped to fight, ready to live and blessed by God. It's just gonna take a little getting used to, about 10 extra pounds and a hot new push-up bra, in hot pink preferably. Hair would help, but that can wait.

Sunday, December 5, 2010

Spa Day

Today is Day 4 since my last treatment, and I feel damn good. Besides an I-got-punched-in-the-face-last-night sensation – or do you ever remember making out with someone so hard when you were 17 that your face kind of hurt? Well, it's just like that. And, my neck and my head feel tender, almost bruised.

I was so nervous about this one, this last dose of medicine, because the nurses, and things I've read, kept saying that chemotherapy meds are cumulative. "You'll feel worse after each subsequent treatment, you'll feel more tired, and so on." This time, too, I had to get a Neulasta shot after. It's a white blood cell booster. I've heard horror stories about the bone pain and flu-like symptoms that it can cause. But, so far, barely anything to speak of. Some funky pains in my leg, but I think I just needed a good stretch.

Come to think of it. Chemo day is kind of like spa day. Kicked back in a recliner with my feet up, my man next to me, no baby, a hefty dose of Benny (that means Benadryl), trashy mags, crochet hook with some yummy yarn, and we're off to the races.

Tuesday, November 30, 2010

Happy Tears

Jon shaved my head last night, and I shaved his. We were laughing hysterically, in tears over the haircut Jon first gave me, and then I gave him. I looked like a rat. He looked like Kurt Cobain. Jon looks hot. He says I look sexy. We're not bald, just super short. I will, however, be bald someday soon. This will make it easier, and I won't be leaving a trail of hair everywhere I go.

Today I'm wearing my wig for the first time. I was feeling good about it, until my sister told me the tag was hanging out in the back. Awesome.

The Incredible Shrinking Woman

I've been losing lots of weight ever since NJ was born, which will have been a year on December 9. My how things can change in just one year. That alone is humbling, and yet, invigorating. Lesson: Don't get in a frenzy over future planning.

I had been holding out on buying any new, smaller clothes, hoping rather that I was going to actually have a butt again someday. But, I have not been feeling very cute lately, and it's time to get my mojo back.

First, I went to J.Crew. For one thing, I'm not too keen on the skinny, "minnie," cropped trend. I'm short = not a good idea to cut off the little legs that I have above the ankle. The only more "traditional" (I never thought I'd use this word to describe myself, ever.) bootcut jeans they have don't come in my size. Seriously, they don't make them small enough. I really am shrinking. What the hell? I do, however, know where they have teeny jeans, and I haven't been there in, like, 10 years. Dear lord, don't make me say it. Abercrombie.

I looked on the mall directory for the store. I couldn't even find it. I was looking in the "Women's Apparel" section, because I'm a woman, and I'm looking for clothes, for women. But, Abercrombie is in the "Teen's Apparel" section, which is why I couldn't freakin find it. But, guess what, I got fabulous jeans there, in a size 00 mind you. The only problem is that I cannot get the smell of that damn perfume out of my hair – finally, an upside to balding. Anyway, my butt is back, and so is my mojo.

Friday, November 26, 2010

Premature Balding

I think of Bald and I think of George Costanza. I am a vain person. I'll be the first to admit it. My hair is seriously falling out now, and I'm going to be way balder than George could ever be. My "happydom" has come to an end, momentarily. This was something I knew I couldn't prepare for. How can you, really?

I almost cried about it today when Jon asked me how I was doing. It hit me that it's just a matter of time now. My sad little ponytail is about half the thickness it normally would be. It's weird. I will be bald and have no choice in the matter. Oh dear. I don't like this one bit. It's the only outward sign of me being sick. That makes me uncomfortable. It's that more than the hair, maybe. Sick – I hate that word, and I don't feel sick. I need an alternate and am ridding it from my vocabulary. Under the weather? That's better.

Next week I will have to go to work for the first time wearing a wig. I told Jon I hope no one notices. I haven't really told anyone at work other than my a few people, and I don't plan on it at this point. I mean, who really wants to make a big deal about it? Not me. At some point, I might just tell the right person and let it makes it way. I'm undecided. I think two days and counting. I'll be like a hairless cat before the weekend is done.

I tried "Lola" on tonight. I think I like her, kinda better than my own hair.

Wednesday, November 24, 2010

Retail Therapy vs. Chemotherapy

I'm a sucker for pretty, feminine, special blouses. This one is from Rebecca Taylor, who also designed my favorite-dress-ever that I wore at my wedding rehearsal dinner. My favorite dress besides my wedding dress, of course. Isn't it lovely? I think I'll wear it to NJ's birthday party, and it will look nice with my new wig. I should get some lip gloss to go with it. It was half off, AND, a whopping 50% goes directly to the Triple Negative Breast Cancer Foundation. Sold. I'll take retail therapy over chemotherapy any day.

One thing that's cool about getting cancer is that I don't feel guilt anymore. I used to be plagued with it at times. Guilty for buying something too expensive, guilty for being too cheap, guilty for saying the wrong thing, or for not being nice enough, or for being a bitch, or not working hard enough, or not being sweet enough to my handsome hubby or blah blah blah.

I'm finished with it. However, it was not a conscious choice. It was a switch that turned off more than anything. Just a magic switch.

It's kind of awesome. (Honey, if you're reading this, don't you like it? I think you should buy something for yourself too. wink wink. love you.)

Heartbreak and Hangups

My one moment of desperation so far was on the second night after I found out. I cried so hard when we were in bed. Me, Jon, NJ – she sleeps with us. I know, I know: "You'll never get her out of your bed...You're really in for it now...Your marriage will suffer...She needs more independence..." I've heard it all, trust me. But, the truth is, I love that she snuggles with us in bed all night long. And, Jon does too. I don't think it will last forever. In fact, I know it won't. And, I'm going to savor it for all its worth. I burst into tears this particular night, humbled by the sweetness of it all. Our bedtime routine. Our happiness. The thought that it could possibly end was wrenching. I sobbed and professed all of my fears to Jon. It breaks my own heart to think of it now. Me, in a moment of sheer desperation. Clutching on to my sweet baby for dear life. I think she was laughing, smiling, giggling. I love that she can go on being happy no matter what. She's happy just that we're there, with her.

That night was a turning point for me. Jon confessed that he feared many of the same things, and that made me feel comforted.

I learned this simple lesson in a few short weeks: When you voice your fears, they dissipate.  Maybe I'd even heard this before, or been told that it was the answer, but didn't listen. Now it's so clear.

This morning I felt that fearlessness again. I was driving to work, listening to The Court Yard Hounds – The Dixie Chicks with no dixie, or, sans Natalie Maines – and was thinking about some things I wanted to write about today. Somehow I said to myself for the first time that I really am a writer, even a good writer, and that I'm not doubting myself anymore. It was like my chest swung open and angels flew in. I got goosebumps. I felt like a vice was lifted. Once and for all. A lifetime of hangups disappeared in an instant. Just like that.

The Problem With Hair

I think my hair is falling out. I was kind of thinking, hoping that maybe I would be the exception to the rule. But, this morning, it was happening. It was kind of like serious shedding, which happened for a few months after having NJ. But, this is different. It was more even, and I thought it was a lot before. My glorious long brown locks. This is something I can't quite come to terms with in advance, and started to really feel nervous about. Like, butterflies. I've always had long hair. Forever, except for once in 5th grade and once when I first went off to college in Knoxville. Never again, until now. I worry what NJ will think more than anyone. Will she recognize me? Will she cry? I really hope it doesn't scare her. She doesn't even like it when I wear hats. She's totally going to rip my wig off. I hope not in public.

Jon is excited. I'm glad someone is. This is the wig I ordered from Senorita at the wig store.
It's not in yet. It better get here, pronto.

Marbles Are Better Than Golf Balls

My tumor is shrinking. Seriously, melting. I say things to it some days like, "Get the f out of my body. You are so done for." Or, "I hate you, and you are not welcome here." There's variations, and I must admit: some are more perverse than you might imagine. But, I really think it's working. I do so enjoy dirty curse words, and I'm happy to say they're coming in handy, at last.

Monday, November 22, 2010

A Little Like Bad Acid

I got my first chemo treatment over a week ago now. Today's Monday. It was the Friday before last. Next time it will be interesting for me to write down what happens and how I feel physically in the days immediately following. I quickly forget. When I went to see Nurse Marina last week for my blood counts, she asked me all of the questions about what I'd experienced, when, how much, what time, when did it end. Shit. I don't really know, I told her, and promised to pay better attention next time. I don't know if they do this for everyone on chemotherapy, regardless of it being a trial. I am doing a clinical trial. There are a lot of them for triple negative breast cancer. That's the kind I have. Did you know there were different kinds of breast cancer? I didn't.

When I was going through my 3-day-post-diagnosis-online-obsession freakout, I had glossed over but noticed a special breast cancer. After I got my pathology report in hand, when I was brave enough to even look at it – which took me a few tries it was so scary – I learned that my kind of breast cancer was in fact the triple neg. I always wanted to be special, but this isn't exactly what I'd had in mind. I mean, there's a whole foundation devoted just to my kind. I don't think that's a good sign. But, I've since changed my mind. I've learned to read things in a new way. Only pay attention to the good stuff, and there's quite a lot when it comes to triple negative. I prefer to call it triple awesome.

Here's why:
1. There wasn't even a name for this "kind" just a few years ago, which just goes to show how insanely fast, crazy, mind-boggling discoveries are being made with breast cancer, and with triple negative specifically. 2. There is a foundation devoted just to my kind. 3. After being cured for at least five years, the chances of a recurrence goes way, way down, moreso than the other kinds of breast cancer.
4. Triple negative breast cancer is particularly sensitive to chemotherapy.

I like drugs. I've always liked them, and this is no exception. After my first chemotherapy treatment, I felt like the morning after eating some dirty paper acid. My jaw hurt and by back too, and I felt tired as hell. Kinda like I'd been up all night, partying, watching trails, having crazy conversations about energy and why Trey is the best guitar player ever, and colors. And so much laughing. My stomach kind of hurt, too. I wonder now what the chemical makeup of this stuff is. Maybe acid and chemo drugs aren't all that different. I mean, they both have crazy stuff in them, right? Anyway, I love chemo, and I'll take what I can get without OD'ing. The same approach I took with the bad acid, and perhaps a few other substances, which shall remain nameless.

Working

I was online, doing some research for work. Come on, seriously, I wasn't looking up the latest items added to j.crew sale, or the vast color array of Mac lipglosses, or an imaginary floral aqua, red, pink and white tablecloth (maybe Anthro?). I was seeing about the difference between anytime and any time, and also sales tax vs. sales-tax. Ah, the fascinating life of an editor. I love it, the minutiae, the silly qualms that make up an hour sometimes. Words are cool. Ok, I'm a nerd. Whatever. There was a banner ad for St. Jude's, and a photo of this sad-looking boy with mendullo-something.

The company that I work for supports a charity called CAN, or Corporate Angel Network. It's pretty sweet actually. They provide free flights onboard their corporate aircraft for cancer patients needing a way to get to treatment in various parts of the country. We ran a gratis ad in the magazine that I work on for my job. There was a sad girl, who presumably was afflicted with some horrible disease, holding a teddy bear on a plane. It was freakin' depressing. My designer and I would laugh about it. Not that horrible ad with the sad, sleeping girl, we'd say.

Never a few weeks ago would I have ever in my wildest dreams imagined that I would be that girl. Well, not all sad and sleepy, but figuratively speaking. So, when I saw that St. Jude's ad today online, while I was looking up trivial compounds, I really stared at it. And genuinely felt sad for that little guy, his family, everyone who loves him, the doctors who are doing everything they can to cure him – but not for me.

I feel so happy. Like, exceptionally happy. Am I sad-proof? In a state of perpetual happydom? (God, that does not mean I need some OTHER crazy life-threatening/traumatic course-altering/challenging obstacle. I'm good. Thanks :)

Sunday, November 21, 2010

A Word About Diet

One of the first people I called after I found out about "the situation" was my HR director at work. Immediately when I told her the deal, she said she had a friend who has been going down this road and is on the other end. Would I like for her to call me she asked. Sure, I said. Literally, within five minutes, a woman I'd never met before lifted me up.

Her name is Judy, and she gave me information, resources, the number for a breast cancer support hotline and told me that I needed to change my diet. Sugar is bad, she said. It feeds cancer. This struck a chord with me. I'd been living on sugar and caffeine since NJ was born. There were two bakeries in town, and I frequented them about twice a day. Sometimes I was so busy running around, working from home, nursing NJ, tending to chores, caring for the baby, that I only made time to grab a quick sweet treat. This was the norm, day in and day out, and I liked it. I have a serious sweet tooth after all. My husband, J, and I, in the early days, were known to go on a shopping spree at 7-11, late-night, and spend $25 on candy and big gulps alone, and devour them within the hour. Dang.

The next day, my parents told a good friend of theirs, who also is a realtor and was helping us look for a house, about the big C. He FedEx overnighted two dvds on diet. On a note attached he wrote, "Amy has to change her diet right away to get better." And to call his mother if I had any questions.

Of all of the books Judy had read during her victorious fight with breast cancer, she said "Anticancer" was the best. Read it right away, she urged. I went to the bookstore and bought that, along with The Cancer-Fighting Kitchen. I can do this, I thought. I'm building up my arsenal, and I'm kicking the shit out of cancer. I'm not dying. In fact, how could I have even thought that. Not a chance in hell.

Yesterday, I spent $341 at Whole Foods, and I've never felt better.

Friday, November 19, 2010

God Is Twisted

This is a true story: About two months ago, I was driving in my car, talking, praying in a way, to God. I do this every now and again. I was bummed about not having much to write about these days. I lamented, in fact. I'm too dang happy to be a tortured writer, I said in so many words. I prayed for stories, creativity, a light, inspiration and words.

About three weeks ago, God answered my prayers. I was diagnosed with breast cancer. And, this is my story.

The Diagnosis
Just after my diagnosis, I was, of course, crushed in a way I've never been crushed before. Death, it seemed, was paying me a visit, at the very least. I had sensed it in a way. Prayed a "just-in-case" prayer when I'd driven by "I'm Still Me" breast cancer boutique on my way home from work, gotten the heebies when I eyed The Lake Manassas Cancer Center. Sometimes when life seems so sweet I wonder, just how long is this going to last? Forever, I hoped.

But, this damn lump in my boob was getting bigger. When I went to my ob/gyn just 3 months ago, they assured me it was nothing. I'd just had a baby after all. A gorgeous, perfect baby girl, mind you, with a "doesn't it make you jealous" delivery and a "doesn't it make you sick how skinny I am after I just had a baby" body. My doctor did send me across the way to the ultrasound specialists, but they confirmed the same. Just a lactating adenoma. Not to worry. But, I did worry. And, as I worried, it was growing, and starting to hurt.

When I went to the breast surgeon in October, she did a low-key ultrasound in her office just to get an idea of what we might be dealing with. "It doesn't look suspicious," and it moves around, she said. "It feels a little bouncy, so let's try to aspirate it and see what happens." Ew, a needle in my boob. I can't think of anything more enticing. Nothing came out. Onto the biopsy, but I'd have to come back so my insurance could approve it first. Two days later, and a crazy contraption was shaving cancerous cells off of the golf ball in the top left side of my breast, and only a few days after that, it was confirmed.

That day when I went in to get the verdict, I scoured the nurse's face to see if she knew something, I studied her body language looking for clues. She seemed removed. Not a good sign I thought. And as soon as the doc walked in, I could feel the weight in the room. She touched my leg and said, "It's positive." I said what the fuck, and she confessed she'd said the same thing when she got her hands on the pathology report. We were both shocked. Less than five minutes later, she was giving me options, drawing sketches of boobs on paper, incision marks, chemo, radiation, oncologist. Stop! I can't listen to all of this right now. I have to tell you your options, she said. The prognosis is always good. Not always, I thought. It can't always be good.

I don't remember the exact date when it all went down. The day my life changed irrevocably. All I know is that I don't want to remember. I don't want that day going down in history. I'd rather forget it frankly. And, now, I'm determined that someday I will.

My mom was at home watching NJ, and she was sure it was nothing. We all were. Except for that little voice that I heard telling me it wasn't. And, now, I had to go home and tell her that I had breast cancer. The first person in my family ever to have breast cancer. I thought this shit was hereditary.

In the days after, I couldn't hear right. I felt like I was in a tunnel, and time slowed down, and nearly stopped entirely. It was NJ's first Halloween, and it was bittersweet. Everything was so sacred, fragile. I felt like I was trapped in a glass box that might shatter and break at any second. I could hear atoms and molecules actually shifting in the atmosphere; I could feel my legs cutting through the thickness of the universe and my feet seemed to sink into the concrete. There was an echo. And, finally, I broke down, uncontrollably, fiercely declaring my darkest fears, ones that a 35-year-old woman in the prime of her life should never have to give testimony to. Am I going to die and will I see NJ grow up?

My internet obsession then began. I searched for stories, people, women like me, JUST like me, who were writing about their journey and WINNING at it. There are a few, mostly on forums or foundation websites. But most of them were older, or had a different kind of breast cancer. One of them had died. I wanted a real girl with a real story. And, one that wasn't depressing. Where was she?

Here I Am
Now. Here I am. Not merely compelled to write, but rather, forced to, by God. I am in no position to ignore such an overt sign, am I? So, it seems, I MUST write.

I've always been a writer, and am an editor by trade. But, of course, as is the case with so many writers, the fear can be crippling. Fear of judgment, criticism, transparency. For any artist, it's the first and hardest obstacle to overcome. And, while it's the first, it's also the second and the third and the fourth. It is always there, threatening to overcome the hard-won armor of confidence. It is relentless.

But, things are different now. Not only is my bucket of excuses empty, but my fear is palpable but weak, and I can easily overcome it these days. Fear in me is waning everyday. And, soon, I believe, it will be gone forever. I feel brave.

This is not your everyday breast cancer blog. I don't intend for it to be depressing or overly medical, or inspirational, or exhaustive. I just hope that someone who has been diagnosed, or anyone really, will read it and find something helpful, funny, pretty, encouraging or thought-provoking. Mostly so someone sees I've been there, done that, and I'm okay. I'm not dying, and neither are you.

Tuesday, November 16, 2010

What's In a Name?

thug jug = A 2L bottle of alcohol, usually a cooler. Usually people just drink right from the bottle, because that's how thugs roll.


jug thug = The asshole that's hijacking my boob.