The Cancer Chronicles #1: Goddamned Fucking Fatigue

It’s been about two years since I’ve received my last chemo treatment, but the hits just keep on comin’! Two brutal winters, two gloriously hot, hot, hot summers, fevers, anemia, iron infusions, pneumonia, remission, stage 1, bone marrow tests, PET Scans, remission, fevers, stage 1, B Cells, post chemo hair loss, fatigue, fatigue, fatigue.

When I say that i’m tired, I don’t mean that I didn’t sleep well last night. It means that I’m tired. Goddamned fucking town to the marrow in my bones tired. Exhaustion. Sleep does not elude me. I can sleep for days.

Really.

Days.

Having an almost seven year old darling girl is hard. I want to have energy for her. I want to want to play dolls. I play dolls and all I think about is my big comfy bed in the next room. I look at the clock over and over and over again. I hired a “Mommy’s Helper”. A cute nineteen year old girl who probably spends her cash earned on bags of pot and pregnancy tests, but she’s good. She’s reliable and my girl loves her. A lot. So much, in fact, that I’ve been getting jealous.

Which brings me to today. The school’s annual “Boo-Bash.” A big ol’ Halloween party to generate tons of cash for all of the luxuries that other New York City public schools just don’t have. Chess lessons, a fully updated and beautiful computer lab, yoga,  tennis, classroom libraries. Good shit. My friends’ kids don’t go to schools with all of these extra goodies. So, this school is constantly throwing parties, auctions, bake sales, flower sales, and of course asking for good ol’ fashioned cash in an envelope.

Back to the Boo Bash. My Mommy’s Helper offered to take my girl, but I declined her offer. I need to do Mommy stuff with her before she’s screaming “Fuck You!” at me before slamming her door. I don’t want to go. I’m fucking dreading it. I want to curl up in my bed and doze off until bedtime. My daughter is running around in her Cheerleading costume. The bash doesn’t start until 5 PM and I already feel like it’s midnight. I’ve called my oncologist three times in the past couple of weeks because of this paralyzing fatigue and he tells me I need a PET scan.

Sigh.

At least I can catch a nap on the subway ride there.

“This Is Why I’m Crying…”

It’s an inside joke among my tight circle of Brooklyn friends and myself dating back about 23 years. We were causing raucous inside of a Bodega located inFlatbush proper when one or two of my friends started jawing with the owner trying to get a deal on some Sour Power candy. (This is how I spent many a Brooklyn afternoon. No libraries for us.) Of course, marijuana was involved, we all found it hysterical and after driving the owner bat shit crazy for about fifteen minutes, he covered his face with his hands and in his Middle Eastern accent whimpered “This is why I’m crying!!!”

Eat at your own risk! Make sure to brush and see a dentist as soon as possible after sucking, chewing and ingesting this tart and super sugary treat. (Sounds so dirty, but that's how you eat 'em!)

Eat at your own risk! Make sure to brush and see a dentist as soon as possible after sucking, chewing and ingesting this tart and super sugary treat. (Sounds so dirty, but that’s how you eat ’em!)

 

Two decades later, whenever something less than catastrophic happens to one of us, a “This is why I’m crying!” escapes our lips. We still laugh and laugh. Today I am crying, because as a a sun worshipper, a beach baby, a Coppertone Queen, I have been banned from the beach due to high fevers and left with nothing but Coney Island dreaming’ and a bottle of (Oh God, I hate to say this…) a b-b-b-bottle of Neutrogena Build A Tan. It smells pretty bad, stained my hands, but, I have to admit– it works. I have a lovely, smelly, fake tan. I can wear shorts and a tank top without feeling my pasty self-consciousness. (I’ve always wanted to review beauty products, so I consider this my first one. If you can get past the smell and are super careful with application, it really does give a realistic looking sun kissed glow.)

This is why I'm crying...

This is why I’m crying…

I love summer clothes and I love a deep golden tan and to me, you can not have one without the other. I’ve been to the beach a handful of times since June, but nothing significant enough to give me that lovely glow I start dreaming about each March.

I'll take the striped bum, please.

I’ll take the striped bum, please.

 

But… My health and comfort comes first. My poor girl, stuck in the house with her sick Mommy. 101 fever, nausea, headache.

I guess we’ll go the the ceramics workshop in a little while to get her out of the house. Maybe I’ll paint a Palm Tree. (Note: There are no Palm Trees in Brooklyn. It’s my sad attempt at symbolism.)

I want this...

I want this…

 

But I have to settle for this.

But I have to settle for this.

This is why I’m crying!!!

Beg. Borrow. Steal.

I haven’t been well these past couple of weeks. Raging fevers and general malaise prompted my oncologist to prescribe me 20 mg of prednisone a day and strict bed rest. I didn’t even get bed rest when my ob-gyn thought … Continue reading

Get Busy Livin’ or Get Busy Dyin’

Another hot recluseI am becoming have become a recluse.

Not quite sure when or how it happened. Slowly, over time, but yeah.

I have become a recluse.

I’m sick. I’m exhausted. I’m sad and depressed. This is so honest my heart hurts writing it.

My life has become a mundane routine of waking up, dropping my girl off at school and then off to various doctor appointments or other wretched obligations. I have a hair appointment tomorrow afternoon and I don’t want to go. I’m dreading it.

I’m dreading a hair appointment!

I crawl underneath my covers in a benzo haze and pray for sweet dreams. I wake up to a silent phone.

Where did my friends go? Where is my family? I’ve reached out. I have. They’re gettin’ busy livin’. And I’m getting busy dyin’.

Except for him. I love him. More than any man I’ve ever known. He wants to see me and I push him away. “I’m too sick” I say. I am sick. Physically. Emotionally. I don’t want him to see me like this.

He makes me feel ALIVE. Maybe that’s why I’ve been pulling away. I miss him so much my body aches. His voice. His scent. His laugh. His…

When I was first diagnosed with cancer, I fought so hard. I got busy livin’…not knowing if I would actually make it.

I made it.

When the divorce started, sick in my bones, I fought like a boxer. I won. I made it.

This winter was brutal, but I got up everyday, put on my face and got busy livin’. Spring is life. Life. Spring has arrived and I’m too busy dyin’ to LIVE.

I’ve never felt this way before. If it wasn’t for my girl, Oh My God, I’d spend my life in bed. Throw away this phone that I’m writing this from and wither away.

I want to say these feelings will pass, but they’re not feelings. They’ve become a way of life.

I don’t want to lay down and die. That’s not me! I’m a fighter! I’m fun! I’m happy. I used to be.

I gotta get busy livin’, man, because dying, dying is way too easy.

I have cancer. And I feel sorry for it.

Because it tried to fuck with me and I kicked its sorry ass. I’ve been so busy writing about the loves of my life and other ramblings that I’ve almost forgotten about my cancer. 

I had to get a PET scan done a few weeks ago. The results came back a few weeks later. No signs that the cancer had metastasized. My doctor told me that he was going to hold off on the Cytoxan and give me two more rounds of Rituxan (one coming up next week) and then he’ll have me come in bi-weekly to check my blood counts and basically monitor me. He also said that after I finish the Rituxan, there is a good chance of it coming back.  But for now, I’m technically in remission! 

I guess I’ll have to go back to work somewhere…

But, I’m not worried about that right now. I’m just thrilled that I get to keep my hair and that I’m kicking this bitch’s ass. 

Fuck you, cancer!

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War Wounds. August 15, 2013.

I look like a junkie. Tattoos and track marks aren’t exactly a pristine first impression. Fuck everyone. I have cancer.

I went to battle against my cancer yesterday. First, I was denied the right to eat or drink anything for 8 hours before the procedure. I had a plate of linguine with bolognese sauce at 10:30 PM the night before. The ultimate punishment was the denial of my morning coffee. I can’t remember the last time I went without a cup of morning coffee. It was probably the night I spent in jail.

The next morning. Rise and shine. A quick visit to my daughter’s last day of school party and then the drive from Park Slope to Kew Gardens. Navigation systems are dumb. They send you around in circles. I arrived at the imaging center. Short wait to be called, five hours of procedure. An IV filled with radioactive fluid injected into my left arm for an hour. Waiting. Freezing. Then one hour in a contraption with an uncanny resemblance to a rocket ship. They strapped me down so I couldn’t move while pictures were taken of my entire insides. If the cancer has spread or if there is any cancer at all, it will light up like a Christmas tree on the disc they’re sending my doctor.

It was already 3:00 PM. I had an appointment with my Oncologist to discuss this Cytoxan he wants to start me on. I went armed with a list of questions and another list of the information I needed to get a second opinion at Sloan Kettering. I AM NOT LOSING MY HAIR. More needles. Short wait. Then a discussion with my doctor. I told him I didn’t understand why he was suddenly going to put me on this additional treatment when just last month he told me the cancer was practically undetectable from my blood work. He told me it was because I was still experiencing the “B” symptoms of my cancer (night sweats, fatigue, loss of appetite, fevers.) I told him that they come and go and reminded him that he also told me that they would fluctuate. Our conversation ended with this compromise: I will keep the appointment for the Cytoxan for September 12 for now. He will review the PET scan results when he receives the results, he will advise me of his treatment plan. I slipped the list of information I needed for the second opinion at Sloan Kettering back into my bag.

I just wanted to go home.

This cancer is a war. Me against the cells.

I’m going to win.

And the next time I get stuck with a needle, I want it filled with ink and leave a permanent image.

I miss getting tattooed.

Hey Cancer! You Picked the Wrong Bitch!

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I was really looking forward to my monthly round of Rituxan today. I’ve been so busy with the scandal, my little girl and this wretched divorce that I was actually relieved to have a day to myself with nothing to do but lounge in a big ol’ recliner, sleep and watch TV. Everything went so smoothly. I haven’t been feeling very well lately, but I contributed that to all the emotional garbage I’m experiencing. Since my “working” diagnosis in January, I’ve been handling this cancer like a champ.

So like I wrote before, everything went smoothly today. No infiltrations, six hours as opposed to eight, woke up froma long nap and Bon Jovi was on “The Katie Show”. (Disclaimer: I have never, ever, watched “The Katie Show or any daytime TV in my life, but it was Bon Jovi, for Chrissakes!)

My doctor wanted to talk to me after my treatment, which was cool. I’ve been doing so much better, I haven’t spoken to him in a while.

Not Cool. Bad News.

When I had surgery to remove a lymph node back in February, it came back positive for Chronic Lymphocytic Leukemia/Follicular Lymphoma. It was explained to me that they are practically identical, and can change from one to another. He treated me for the lymphoma.

Then we had a talk.

I strolled into his office all smiles, like I just walked out of a Goddamned spa rather than an infusion room when he told me that he wanted to add another treatment to my Rituxan.

Cytoxan.

Just hearing the name I knew it was bad. I asked him “what is it and why?” He told me that the Rituxan just wasn’t doing the job on it’s own and with my symptoms and “numbers” he thinks the lymphoma is turning into the leukemia. He explained that the Cytoxan is more of a traditional chemotherapy as opposed to the Rituxan.

My first question: “Am I going to lose my hair?”

Long story short, I probably will–at least some of it. I’ll most likely puke a lot and feel really, really shitty. My scumbag (ex)husband will probably use this to try and gain primary custody of my girlie, even though he doesn’t really want it, as it interferes with his drinking and whoring around. He earns a lot of money and child support is 17% of his yearly salary. We’re talking money here, people. That’s all it is to him. Money.

I tried really hard not to cry in the doctor’s office. I’ve always been so positive and fun around him. He calls me “Hollywood”. He calls me “Trouble.” I walked out to the reception desk with an appointment slip for an office visit next week.

Maybe things will change between now and then?

Anyway, the horribly vain part of my is hoping that if I DO lose hair, it’s only on one side of my head so I can rock the new half shaved, have long look that’s so trendy right now.

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Perfect timing.

My stomach hurts.

But you gotta stay hot.

You gotta.

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You Gotta Stay Hot

I’m hot, and it’s not just the brutal heat this past month here in Brooklyn. I mean, I think I look pretty damn hot for a 37 year old woman going through chemo treatments. I promised myself, when I first found out that I had cancer and would have to go through these hellish treatments, that I would NOT succumb to my illness–internally of course, but externally, I was going to remain as hot as possible. I would try my hardest, even on my worst days, to make myself feel good and when you look good, you feel good. So here’s Suzy’s little guide to all of you women out there going through, or recovering from ANY illness that makes you feel like shit on the inside, that I hope will inspire you to feel your best all over.

That face!

My oncologist calls me “Hollywood”. My chemotherapy usually begins at 10:00 AM, an hour of premeds, four hours of Rituxan and finally an hour of hydration. I wake up early  on those mornings and I put on my face. I’ve always loved the art of makeup, and I understand that it’s not for everybody, but I put on a full face–foundation, blush, eyeshadow, mascara, my signature cat eye and and all day lipstick or gloss. I generally watch the TV in the infusion room for a while and then put on my big ol’ sunglasses, cuddle up with the blanket my friends gifted me as part of my “chemo-kit” and take a nap. By the time, I wake up, groggy from all of the Benadryl pumped into my veins, my doctor is back from his rounds at the hospital and checking up on everyone in the infusion room. He always calls out “Hollywood! How are you feeling today? At my last session, he asked me why I always wore sunglasses during my infusions. I told him that I didn’t like people to see me sleeping. He responded with one of the greatest compliments I’ve ever received. “When you’re sleeping with those big sunglasses and lipstick, you remind me of a movie star lounging on a boat on the Riviera.” It’s impossible not to feel better after hearing that! So, even if you’re not into the “full-face”, throw on some lipgloss and invest in a flattering pair of shades. You’ll feel better. I promise you! As the late Talia Castellano said “Makeup is my wig.”

Hair

I can’t offer much advice in this area, because unlike many of you who are going through chemotherapy, my hair hasn’t fallen out. I have terrible side effects on my scalp, which means no more hair color, but I make sure to keep it clean and styled. I can’t sleep with a ponytail (it hurts the back of my head) so sometimes I’ll just pile it on top of my head in a messy bun or clip. If I have to move on to the type of chemo that will cause my hair to fall out, I’m rocking the gypsy look. I’ve already googled “How to Tie a Head Scarf” and with some big hoop earrings and my makeup, I will know that I’ve kept my promise to say hot under all circumstances.

Chemo Clothes

You’re going to be spending a lot of time in that infusion room, chained to an IV, unable to move one arm, so despite the fact that my face may be “Hollywood”, my chemo clothes are certainly not. I don’t want to look like a complete slob, so I have a small collection of what I call my “Chemo-Clothes.” I adore my Lululemon sweatpants. They are comfy and warm–and they have pockets! I usually pair them with a Gap tank or t-shirt, socks (Socks are a must!!) and a pair of sneakers. The sneakers ALWAYS come off during chemo.  I haven’t had the luxury of getting my regular pedicures as I have in years past so I don’t want to scare anyone with my unsightly feet, besides, it gets cold in those rooms, which means you’ll also need a chemo blanket. There are always blankets available if you don’t bring your own, but I like to feel a sense of security. Kind of like Linus.

Sleepy Time

If you’re going through chemo, chances are you’ll be spending a lot of time in bed. I’m exhausted all of the time and I can sleep for an entire day after a chemo session, so what did I do? I went out and treated myself to two sets of brand new 1,000 thread count 100% cotton sheets, down pillows, and the comforter I’ve always wanted. I changed my bedroom around to give it a “beach” feel because that’s one of my restrictions. No sunning, no excessive heat. If I can’t visit the beach in reality, I have it right in my bedroom. My bed is absolute heaven when I return home feeling germy and tired from chemotherapy. I wake up feeling refreshed (as possible) and if I’m too tired to do the laundry, I have an extra set ready to slip on my heavenly bed as the other set sits in the laundry basket.

Buy yourself some comfy, but sexy loungewear. Two of the symptoms and side effects of my cancer and treatment are daily fevers and night sweats. Gross. But after a cool shower or bath, I wrap myself up in a fluffy towel, air dry in front of my air conditioner and slip into one of my many comfy, not frumpy, nightgowns. I’m not writing about lingerie here,though I do still love my lacy underpinnings, I mean long comfy gowns. I love the long cotton gowns from Victoria’s Secret. They’re comfy, pretty and yeah, a little bit sexy. Little shorts and a tank work just as well. I’ve only experienced chemotherapy in the warmer months, but I figure I’ll just throw a fluffy robe on top of whatever comfy, sexy loungewear I have on once I rise from bed. As I wrote previously, I suffer from horrible night sweats and daily fevers, so I doubt I’ll be pulling out my old flannel pajamas anytime in the future.

So, my ladies, battling cancer is no fun at all. Most days you feel like shit, but you don’t have to look like you feel like shit! Do what you can to stay hot-start by telling yourself that you are beautiful, strong, and happy.

You gotta stay hot.

You gotta!

You gotta stay hot!

You gotta stay hot!