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.

Suzy’s Lapses

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I’m such a lazy blogger. I have a bunch of drafts and a river of ideas running through my mind, but there are periods of time when I just can’t bring myself to write.

It could be depression. I can write several posts on my battle with depression.

It could be fatigue. My cancer doesn’t want to go away and I have “traces” of leukemia in my blood. Not enough to treat but enough to make me crazy, super tired. I have to “watch and wait.” That’s all I can do. Watch and wait. Oh, and have a colonoscopy. Yay Cancer!!!

It could be my single mom status. I’m with my girl all of the time. When she’s with her Dad, I just want to collapse in bed or on the beach. I used to use that time to have sex, but that came to an end last week. (Yes, I’m pissed. Yes, I will write the post when I can focus.”)

It could be my slowly dying MacBook. I really need a new one. I should just bite the bullet and slap it on a credit card.

Whatever the reason is, I am going to try really hard to post at least once or twice a week–even if it’s just a photo with a few words or…oh who the hell am I kidding?? I’m not going to post a damn photo with a few words! I’ve never done that before.

I am going to finish up some of my drafts. I am going to continue my “Great Loves” series. I am going to be present.

I’m scrolling through my reader and I realize that I miss y’all!!

You will see me again soon.

Kisses!!

Gratitude: Day 3

I’ve had a terrible week, but I refuse to give up on my gratitude challenge!

My Doctors
I’m so grateful for my wonderful, attentive, excellent doctors. For those of you who do not know how I was diagnosed with CLL, it was my Ob/Gyn who found it. I went in for my yearly check up in January 2013 weighing 90 pounds. He asked if I was anorexic. When I exclaimed “No!” He asked to run some tests. Two days later I received a call from him telling me I had to see a hematologist–like yesterday. My white blood cell count was off the charts. One week later, I was tentatively diagnosed with leukemia by the best hematologist/oncologist in the world. He has not only become my doctor, but strangely, a father figure. He knows my rebellious nature and “warns” me about what I can and can not do at every visit. He also makes me laugh and calls me “Hollywood” because I showed up to every chemo session with my full face on–even lashes! I love them both and thank God for them.

My Education
I am grateful for my education. There are too many places on this Earth where women aren’t even allowed to learn how to read. If they do, they get beaten or killed. There are children in other countries who have one wish–to go to school. Writing this makes me a little teary. We. Are. So. Lucky.

My Apartment
I am grateful for my rent stabilized apartment in Park Slope. As the middle class gets pushed out of NYC due to the gross rent costs, I am grateful to have secured a home in an excellent neighborhood for me and my daughter–and I ain’t leavin’–no matter how much money my new landlord offers to buy us out. It’s no palace, but it’s home and there is an Uncle Louie G’s right on my corner! (For those who are wondering who Uncle Louie is it’s a nice cream shop. I’m a regular…)

“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!!!

I am so small.

I was sitting on my couch, brooding over a cup of coffee, hating my ex husband, watching daytime TV and ignoring the beautiful day right outside my window, when suddenly an emergency news break interrupted my life.

Another Malaysian plane was shot down over the Ukraine. I don’t pay much attention to the news (unless I’m in it…) but the interruption captivated me.

What the fuck is going on? Two Malaysian planes in a couple of months? One of them with no trace of ANYTHING to be found? All of those people, just trying to get here or there caught up in some dumb ass political message? Is that what it is? A message?

All I know is that suddenly my health insurance woes seem a bit less important and I pray for the souls of the victims.

No more war, please.
With my ex.
With my body.
Within the world.

Please?

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.

My Baby Made Me Cry Today

It sounds like the first line or a title to an old southern blues song. One of the songs I would sing along with at the top of my lungs while driving to pick up my baby from her day at Kindergarden. I wish it was a song. Today, I can turn it into one, because I experienced it and that’s where all writers, songwriters included, get their material.

(Read this to the tune of Led Zeppelin’s “You Shook Me”, clearly inspired by the American Southern Blues)

My baby made me cry today.
But she ain’t a baby no more.
She’s five years old.
When did she become so cold?

This is not a post I intended to write today. I’m still in shock. I have had all of these great ideas for posts and have been jotting down my thoughts, but, readers, my health has taken a turn for the worse again and all I can seem to do is sleep and even that seems like work because it’s a tortured sleep. Night sweats, chills, fevers, vivid dreams.

I’m sick again.

I hate to write it because I can’t believe it. It hasn’t been confirmed by anyone other than me and my own body. My doctor is on vacation, but I know my body. This is how I felt right before I started chemo last year. Not good.

A while ago, I told my STILL FUCKING HUSBAND that I would take our daughter for half of this weekend, being Easter and all, I wanted to spend some time with her. This morning I woke up and felt like dying. I called him to inform him I would have to take back my offer to care for her today. I was too sick. A few minutes of verbal abuse later, I told him to forget it. I could handle it. But really, I can’t.

She was so excited to color Easter eggs. I pretended to be. I pulled out the eggs, nine cups-one for each color tablet, the vinegar and measuring cups for the water. Boiled the eggs, let them cool, made the color solution, helped her drop each egg carefully into the color of her choice, pulled out the decorations, watched the eggs for color while she found interest in something else, took them out of the nine cups to dry and took an unexpected nap.

She woke me up a while later saying I had taken a long rest and she wanted to decorate the eggs. I had slept for a while-just under 90 minutes. I groggily made my way to the kitchen to help her decorate the eggs when, with her back turned to me, playing with the kitchen magnets, she began to mock my illness.

She was making fun of me.

She was being a mean girl.

“I’m Mommy. I’m soooooo sick. I’m tired. I need a rest. I have band-aids on my arms.”

I turned around. My eyes welled with tears. I put the blue egg on the kitchen table and began to walk away. She called after me “Mommy, I’m sorry. I’m so sorry, Mommy.” I continued to walk into my room, tears streaming down my face. I didn’t turn around. I closed and locked my bedroom door, curled back under my covers and sobbed and sobbed. I could hear start crying too. “Mommy, please, I was just being funny, Mommy, please, let me in, please, I’m so sorry.”
Of course, I pulled myself up and let her in the room. Wiped my face with a tissue and gave her a hug. I told her if I had one wish it would be to get better. To not be sick anymore so I can have lot of energy. I told her it made me sad when she teased me about being sick. I asked her not to do it again. She promised and promised and begged me to forget all about it. I promised her I forgave her and I would forget all about it.

But I’ll never forget.

All day, my eyes have been randomly filling up with tears. Sometimes, they spill over and I have to quickly wipe them away, sometimes, I just let them slide down my cheeks onto my dirty NY Yankee’s sweat shirt. Sometimes they just fill up and I blink them back like I’m doing right now.

I know, she’s just a kid and she is truly sorry for how she hurt me, but honestly, it’s hard for me to forgive her right now. I look at her trying so hard to make me laugh and all I keep thinking is “it’s 1:30, 1:55, 2:30, 3:00… I can do this. After dinner, time flies by. Soon it will be bedtime…”

Today was supposed to be special. It was supposed to be memorable. And the only memory I will ever have of her fifth Easter is that she made me cry.

My baby made me cry today.

My Coldest Winter Ever

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My coldest winter ever actually started in November. My Mom, the strongest woman I know, the woman who raised five kids on her own, who has battled Multiple Sclerosis for over thirty years, who turned seventy five last July, who has nine grandchildren and who has always taken care of me whenever I was in a crisis ranging from the flu to my scandal became seriously ill with a septic infection. My doctor advised me not to go see her in the hospital because of my own immune system, but I couldn’t stay away from my Mommy while she was ill. She’s always been there for me and I would be there for her. I took the long drive out to Suffolk County, where she now resides with one of my sisters and her family and in my bag I packed the bottle of Lourdes Water that she gave me when she found out I had cancer. My sister rubbed it on her wounded leg, but unlike the “magic” it seemed to work for me, she ended up needing two surgeries on her leg to remove the infected tissue. We had no idea if she would be home for Thanksgiving and being a single Mom dealing with my own illness, I only got to se her once in the hospital, where she stayed for three long weeks. Her recovery would be long and painful and she’s still not fully recovered, but she was home for Thanksgiving and that’s the last time I saw her. I think about her everyday and I know she’s in wonderful hands, but I’m scared. I don’t know what I would do without my Mommy. I don’t even…no…I can’t even think about it.

December was madness. I was broke, it was Christmas time and I have a Christmas baby. I had to plan her 5th birthday party, use my credit cards to purchase gifts, fought with my daughter’s father (we’re STILL married! Longest divorce ever!) about money every single day, decorate the apartment, schlep a tree into my tiny abode, send out birthday invitations and  my Christmas cards (I never miss a year, though according to the ratio of the amount of greetings I sent out versus the amount I received, I think they might be going out of fashion–what a shame.) December wasn’t so cold temperature wise, but I just didn’t feel so jolly. I couldn’t wait until January. 2104. A new year, new beginnings, no resolutions, just hope.

My most sincere apologies to T.S. Elliot, but you’re wrong. January is the cruelest month. I can not remember a January as cold and miserable and snowy as the one that just passed. I’m talking sub-zero temperatures, blizzards once a week, cars iced into their parking spots for days. I’m truly trying to think about one good thing to say about this past January, and in all honesty–I can’t. Complete misery. Layers upon layers of clothing, hats, gloves, long johns, snow boots. Oh, how I want to burn my snow boots! Just throw them in a fire and watch them go up in flames. My apartment is old, so the radiators rattled, banged and finally started spraying boiling water all over my kitchen and bedroom. I still have the towels stuffed under the valves to protect my belongings from water destruction–and the worst part about it? You would think that mopping boiling water from your kitchen floor would leave it with a sparkling shine. Not true. The snow in New York is dirty. Trudging through my hallway into the kitchen wearing the boots I want to burn left them forever scarred. A reminder of the cruelest January I can remember.

February, in my mind, was a joy–only because it has twenty eight days and would make the winter months disappear into spring just a bit faster. I was wrong. Still freezing, still snowing still depressing. My daughter had an entire week off from school and, of course, I had to be a full time Mommy. I had no choice but to put off all of my doctor appointments until she went back to school and before I knew it, the symptoms of my cancer, which has been in remission since late September started coming back. I didn’t get to see my Oncologist until the last week of February and when my blood results came back, they weren’t very good. I’m anemic again and started iron infusions this past week. I have to get another PET scan to see if the cancer spread and there is a very good chance I may have to start treatment again. More waiting… But before I write February off as a complete disaster, there was one warm and wonderful day I will never forget. February 14th. Valentine’s Day. It was the best Valentine’s day of my life. I spent all morning into the mid afternoon underneath my warm covers with an amazing lover and all night with the love of my life. My daughter.

And now it’s March. Oh March, please be good to me. The month started out pretty well. My STILL husband and I signed our custody agreement–joint custody (meaning we make all major decisions about her school, religion, medical conditions etc. together) but I am her physical custodian. I remember just a few months ago, warring with her father and thisclose to giving him custody. But I pulled myself up by my foul winter boot straps and stayed strong. It means so much to me knowing that I won this battle and it’s not about the money he’s going to have to pay me for child support in addition to my alimony; it’s a victory. It’s a sign of my strength and my unending love for my daughter. I may never have another child again, but I have her and she makes me strong and happy and useful and loved. Watching her grow up into a little girl is the most beautiful experience I could ever imagine. I won! My cancer may be back, but with her love and excitement and growth, I gain the strength to keep fighting. Everything.

Today was a beautiful day in Brooklyn. Fifty degrees. No jackets required. Tomorrow will be sunny and forty one degrees. The snow is melting, leaving dirty puddles everywhere, but slowly, my coldest winter ever is coming to an end and Mr. Elliot, I can’t wait for April!

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I thought I could do it…

…but I can’t…

Hey Sean…What the fuck is wrong with me?

It’s been over a month since my last post and good chunk of time before that one as well. I remember posting everyday. Sometimes twice a day and then…

It all dried up.

I feel dried up.

I have so many ideas tumbling through my mind. So many drafts waiting to be finished. And they will wait. And wait.

Because something is wrong with me.

I don’t know what it is. It’s not writer’s block–I have ideas. It’s not so much a lack of time; I can write fairly quickly without editing.

Is it laziness? Depression?

Am I lazy and depressed and therefore can’t write?

Not even an update?

Not even one little love story?

Not one tale about my crazy past lives and the crazy people who have passed through it?

Not even about the scandal? (I’m DYING to write about the scandal.)

What about my Mom? She’s been in the hospital for two weeks. Two surgeries. Seventy-Five years old.

Why can’t I bring myself to write about her?

Or my never-ending divorce. Or my post-remission recovery. Or my newest lipstick. Or my…

Or my anything?

I think I’m lost in this swirl of emotions and I just can’t pin something down.

I need some motivation, please.

I’ve always wanted to be a writer. I know, I know… I’m not the best, and I’m certainly not the worst. But with lulls like this, how could it be?

How could it be?