September is Gold

SeptGoldPic

September is Childhood Cancer Awareness Month, and the color is gold. Pediatric cancer is not a popular subject. It isn’t something we like to discuss or think about. What parents want to imagine their child with cancer? We didn’t want to. Unfortunately, avoiding the thought of it didn’t prevent Robot Boy from developing brain cancer. A PNET-primitive neuroectodermal tumor-to be exact. It’s a long word, but it’s one this mother won’t forget. A PNET is a rare type of brain tumor that carries with it a survival rate of approximately fifty-three percent. My son, RB, was given a forty percent chance of survival.

Brain cancers aren’t the only types of cancer that afflict our youth. According to the National Cancer Institute: “Among the 12 major types of childhood cancers, leukemias (blood cell cancers) and cancers of the brain and central nervous system account for more than half of the new cases.” (http://www.cancer.gov/cancertopics/factsheet/Sites-Types/childhood) Cancer is the leading cause of death by disease for those under the age of nineteen. Even though, pediatric cancer is the least funded and least acknowledged of all cancers. Maybe this is because we don’t want to talk about it. But we aren’t doing the children any favors by avoiding the issue.

Brain tumors are the most common form of solid tumors in children.
Brain tumors are the most common form of solid tumors in children.

Childhood Cancer Awareness is important because pediatric cancer isn’t as widely publicized as other cancers. For this reason, it isn’t funded as much as other cancers, too. It is rare, compared to other types of cancer, but it is just as important. On Sunday September 1, I’m shaving again for Childhood Cancer Awareness. Not my own head this time, but someone else’s. Someone else who is interested in helping to bring recognition to this deadly disease. He asked specifically that RB and I be involved with his selfless act to help bring attention to pediatric cancer. We are more than happy to oblige.

I went bald by choice. Unfortunately, due to harsh, poisonous medications, children with cancer don't have the choice.
I went bald by choice. Unfortunately, due to harsh, poisonous medications, children with cancer don’t have the choice.

The last time I shaved my head was for a St. Baldrick’s Foundation Event, and though this shave isn’t for any event, you can still visit RB’s St. Baldrick’s Foundation home page (http://stbaldricks.org/teams/robotboy) and make a donation. If you’re wondering why you should donate to St. Baldrick’s Foundation, I’ll let you know that they are the second largest entity that dedicates funds to pediatric cancer research (the U.S. Government is the first). I’ll also explain that they dedicate more funds to research than any other cancer foundation-over eighty percent of each dollar donated. They’re funding research in many areas, including those for cancer treatments that are less harmful than current treatments-those that can leave patients with a variety of disabilities.

Robot Boy before we learned he had cancer, before the surgery and treatments that later disabled him, most likely for life.
Robot Boy before we learned he had cancer, before the surgery and treatments that later disabled him-most likely for life.

According to St. Baldrick’s website, 175,000 kids are diagnosed with cancer each year. A child is diagnosed every three minutes. There isn’t much hope for a cure for some children, but because of improved research and treatments, kids’ overall survival rate has dramatically increased over the last sixty years. (http://www.stbaldricks.org/about-childhood-cancer)

Please share. Please donate if you’re able. Any amount is helpful (and much appreciated!). Childhood Cancer is a vicious, insidious killer. Sadly, it’s one that little is known about.

Tête-à-Tête

Image courtesy of Stuart Miles FreeDigitalPhotos.net
Image courtesy of Stuart Miles FreeDigitalPhotos.net 

There are times when I think, This isn’t supposed to be part of my life. Somehow I ended up in someone else’s nightmare. When did I become one of those people things like this happen to?

Wasn’t it enough when my husband’s mistress outed him on the same day I was to leave with my own companion on our “business” trip? She found me in the grocery store buying a bottle of wine she assumed was for my husband and me. Idiotic bitch. Of course I knew he had a mistress. No man spends that much time and money away from home unless he’s fulfilling his needs elsewhere.

I didn’t care. I stopped loving him years ago. Right about the time I discovered his online dating profile claiming he was a widower. I forgave him like all foolish women do for their men. But after a while I got smart. I got a mistress of my own. Except a man. A manstress.

The girl, no more than twenty-five, accosted me right there on the wine aisle between the Rosé and the Merlot. In a resounding voice that came from somewhere beneath her breast implants, she announced she was sleeping with my husband. My response, “Sorry to hear it, Honey.” My husband was a terrible lover. Being touched by him was like being fondled by a fifteen-year-old. Why another woman would want to sleep with him, I’ll never know. I didn’t want to sleep with him. That’s why I found my manstress. He was half my age with the stamina of a varsity rowing team.

The nosey wife of a mutual friend witnessed the event in the grocery store and told her husband who told my husband. When I got home, my husband was waiting for me. He wanted to talk. I wanted to pack my bags and head to the airport. We had a long conversation during which my husband spoon fed me all the same bullshit. He was sorry. He loved me. He didn’t know why he was so selfish and inconsiderate. He didn’t love her. Whatever, Honey. I got two tickets to Phuket and a tanned, toned twenty-three year old waiting for me.

Thanks to my husband’s attempt to keep his ass out of divorce court and free of alimony payments, my manstress and I missed our plane. I used the excuse that I was fed up with my husband’s lies to pack a bag and get the hell out of there. On the way to the airport, I called my lover and we met at a nearby hotel. We couldn’t get another flight until the morning.

“If all the world’s a stage, then this was not part of my script. Somewhere, someone else is reading my lines, playing my part, and I’ve been stuck in their role, for surely this role is not mine. My character was never supposed to turn out this way,” said I.

“But, perhaps it was, and you’re simply unaware because you aren’t able to read ahead,” answered he.

“I don’t like this part of the production at all,” I said as I covered my head with the sheets. “It’s downright miserable, morose and depressing”

“The scales are striking a fair balance; many parts of the production are very good. No production can be completely merry and light. Who’s interested in seeing a performance in which the characters are ideal and perfect?” he asked, pulling the covers from my face. “That wouldn’t be interesting at all.”

“No, we want suffering. We long for it; it’s why we create our own miseries. We loathe them, but they thrill us. I suppose it’s why we strive for imperfection,” I said burying my face in a pillow.

“Perhaps it’s the reason we justify our short-comings. We don’t want happiness; we do everything in our power to remain unhappy, then complain about it.” It was obvious what he was getting at.

“My observations have led me to believe I am not alone in my human imperfection. I would say humanity, but that connotes goodness. The human race is quite lacking in humanity. Myself included. Surely, I understand the failings of my human brethren represent an overall flaw of the species,” I said.

“No one is exempt from these biological, evolutionary, socialized short-comings,” he replied.

“In an ideal world,” I began, ignoring his response, “the term human could be linked with humanity, but in reality – which is never ideal in any way – the term human can be better linked with adjectives such as cruel and bizarre . ”

“Self-pitying, faithless . . .” he interrupted.

“Rude, and worst of all, ignorant,” I finished. “And these are our flaws, as humans. There are more, but I think these cover a pretty wide spectrum of our sadistic, self-serving human behaviors.”

“Are there any human behaviors that are not self-serving?” he asked.

“No,” I answered before rolling over and falling asleep.

 

Copyright Donnell Jeansonne. All rights reserved. Reproduction or duplication whole or in part not permitted without permission and credit to the author.

It’s Okay to be a Bald Girl

Selfie!
Selfie!

I used to tell my husband, who has been bald since we met, that if I could get away with shaving my head I would. I was so envious of his ability to take a 2 minute shower and be ready to go any place within  minutes. No combing, no prepping, no worrying about bad hair days.

When the opportunity came to fulfill two desires, helping St. Baldrick’s Foundation raise money for ped cancer research AND being bald, well of course I was excited. I was so anxious for that day, mostly because I wanted to participate in something important, but also because I wanted to feel my hairless head. I bought a tee shirt that reads, “BALD AND BADASS.” Shaving my head was on my proverbial bucket list.

Hair is overrated. Very much by our society. If someone doesn’t have hair, especially a female, we automatically assume something is wrong with said person-either physically as in illness or something psychological: “She’s just a freak!” Sesame Street has an annoying-as-all-shit song in which the puppet sings for two minutes about how great it is to have hair. I can’t express how incredibly frustrating it was to endure  it while my bald son, who was in the midst of chemotherapy, watched. What is so important about hair?

There are the obvious answers: It protects your scalp from the sun. It keeps your head warm. It’s there to flagellate your face on windy days-if your hair is long, that is. The societal custom of idolizing people with “good hair” is not so logical. People with incredible locks are considered more worthy, as is the case with everyone deemed more attractive. But, does having hair make one more attractive?

Obviously that answer is no. Many chrome domed male celebrities are considered handsome- Dwayne Johnson, Vin Diesel, Bruce Willis, Patrick Stewart (yes he is handsome), Michael Chiklis (Come on. The Thing, Fantastic Four), Andre Agassi (who I thought was more handsome without hair than with), Jason Statham (who isn’t completely bald but pretty much), Chris Daughtry (the only reason I ever watched American Idol, ever), Shemar Moore (hoooooot).

An old photo of my hubby looking like Bruce Willis
An old photo of my hubby looking like Bruce Willis

 

So, we’ve established that men without hair are sexy. All right, not all bald men are sexy:

I'm sure he was very handsome, in his day!
I’m sure he was very handsome in his day!

But what about women? Why is it so unusual for a woman to be bald? Are women less attractive without hair? Well, maybe if you’re head is shaped like a warped cantaloupe (but we can’t all have perfect domes, now can we?)

After the first shave, I decided to keep shaving. I don’t wear wigs. I don’t wear hats, except when it was colder. I don’t hide my baldness. There are reasons for this. One of them is because I can strike a conversation with someone that leads to me telling them about St. Baldrick’s Foundation and the necessity of funding and donations for ped cancer-that is the point, really, isn’t it? Another reason is that I feel there is no shame in being hairless. People who lose their hair should not feel the need to cover their heads out of self-consciousness. If they choose to cover their heads because of personal preferences, then so be it. But no one should feel less worthy because they have no hair. I have to admit I also don’t wear wigs or cover my hair because I’ve always been against adhering to gender roles, and I like to force people to experience their discomfort at something totally innocuous, and then maybe they’ll realize it’s unwarranted. I don’t have to have a hair style. Shaving it is a style. I choose to go bald because I like it, and you know what else? My husband likes it, too (He’s really always had a thing for G.I. Jane). Other reasons I choose to remain bald are that I want to stand in solidarity with  my son, who now has more hair than me. Although, it is obvious his hair isn’t growing in a usual way. I also choose to stand in solidarity with every other woman who has lost her hair due to chemotherapy and radiation, or for other reasons (Lupus, Scarring Alopecia, Alopecia Areata, Trauma . . . Read about some of the causes of hair loss at the Locks of Love website.) Lastly, I am going hairless for the summer because this is New Orleans and it is VERY HOT. Not having hair will be a plus (I will be sure to wear sunscreen). My plan is to start growing it in the fall, and by March next year, I’ll participate in another St. Baldrick’s Event. Lastly lastly, I have absolutely NO TIME for hair. I wake up, work all day taking care of RB and housekeeping, running errands, and on the phone with eighty different coordinators acting as my son’s nurse administrator, then I pass out with my GOD FORSAKEN CPAP MACHINE , but that’s for another blog.

Now, are women less attractive without hair? Let’s see: Sigourney Weaver, Charlize Theron, Robin Roberts, Kellie Pickler (who also shaved her head in solidarity with someone close to her with cancer), Natalie Portman, and Demi Moore.

Photo http://standard.co.uk (http://www.standard.co.uk/lifestyle/health/whats-all-the-buzz-jaime-winstone-shows-how-to-wear-the-close-crop-7654534.html?action=gallery&ino=2)
Photo http://standard.co.uk
http://www.standard.co.uk/lifestyle/health/whats-all-the-buzz-jaime-winstone-shows-how-to-wear-the-close-crop-7654534.html?action=gallery&ino=2

 

I admit I’m no Demi Moore or Natalie Portman, but I am bald. And I’m a girl. And it’s okay.

God Save the Queen

I don’t understand why my wardrobe choice of today drew so much attention.  As usual it was no more than a t-shirt and jeans, my typical hospital clothes. Okay, my typical all the time clothes.

It was my t-shirt that got so much attention. I don’t know why. I’ve worn it before at the hospital, and plenty of places. It’s nothing spectacular. Just a regular old band t-shirt.

The attention drawing t-shirt. Queen’s legendary emblem was designed by Freddie Mercury. It includes symbols of each of the band members’ astrological signs.

The first person to take notice was the respiratory therapist, at six a.m. He said he liked the shirt and I said thanks. He then asked if I made the shirt, to which I replied no and explained Queen is a band, and he said he’d never heard of them. Okay, so, he’s younger than I am, and probably has different taste in music. Maybe he’s  been on Mars for forty years. I don’t know.

Later after lunch I went to the front desk to order my dinner tray. An elderly volunteer working there remarks on the shirt.

Her: “Oh I just love that shirt. It’s so pretty.”

Me: “Thank you.”

Her: “That design is just beautiful.”

Me: “Yes.” Thinking Freddie would be pleased.

Her: “It looks like it’s right out of London. So majestic.”

Me: “They are British, a British rock band.”

Her: “A rock band?”

Me: “Yes a Seventies rock band.”

Her: “The Seventies?” Okay, she is rather elderly. Probably spent more time listening to Pat Boone than rock and roll in the Seventies.

Me: “Well, the Seventies, Eighties, and Nineties. They put out music over that time.”

Her: “How did you keep it looking so new? It looks so new.”

Me:  “. . . Um . . .  it is new. Well, fairly new. A few months old.”

Her: “Oh.” Cue Edith Bunker impression. “Ohhhh.”

Jean Stapleton as Edith Bunker in the ’70’s sitcom All in the Family

The first guy didn’t know Queen, and the elderly lady probably listened to Pat Boone while Queen was combining pseudo-opera and rock and she somehow thinks I kept a shirt looking new for longer than I’ve been alive, but at least the next  person knew the band.

She was another respiratory therapist who is a little (lot) older than I am. Which she stated after she asked when I’d seen Queen, and I told her that I never did but wish I had and that I was only twelve when Freddie Mercury passed away. “Oh then you’re A LOT younger than me, then.” Then she asked, “Who gave you the shirt.” I hesitated, confused. “I bought it,” I said. “Oh, that’s good,” she replied. I supposed last time she bought a band t-shirt you had to actually be at the concert. I dunno. It’s called a catalogue people. But she said she thought the world lost a huge talent when Freddie died, and ain’t nobody can argue with that! Or at least I won’t. Of course the same lady asked where I’d found an app I have on the iPad for Doodles. “I went to the App Store . . . and searched for it,” I said. Did I mention she was a little (lot) older than me? Anyway, she’s OK in my book.

Statue of Freddie Mercury on Lake Geneva. Montreux, Switzerland.

Since tonight is my night off from PICU duty, and the hubs is at the hospital, I’m staying at my mom’s apartment. She lives much closer than we do. As I was walking to her building, I passed a couple on a bench. We all greeted each other like good polite Southerners, then as I walked away, one of the two says, “I like that shirt.” I thank her over my shoulder and walk on wondering what the hell is so special about my shirt today.

I’m by no means a fashionista. I mean, I only wear clothes because it’s the law. All right. I’m kidding. Nobody wants to see this fat bottomed girl letting it all hang out. Smirk.

Just in case any of my readers prefer Pat Boone to Classic Rock or have been on Mars for forty years, have a taste and enjoy the flavor:
Fat Bottomed Girls via Queen Official YouTube

Mother’s Day

Photo credit: Africa via FreeDigitalPhotos.net

I’m late on my post, but it’s something I wanted to share. Yesterday was a bad day for me, what with the baby in the hospital and all. I longed to be spending my time with my family-at the park and having dinner like we did last Mother’s Day.

I wanted to write this as a dedication to some very special women in my life.  Later is better than never, I guess.

I want to start with my maternal grandmother. She was born in 1926, but don’t tell anyone I told you. Her parents came to the good ol’ USA from Italy in the early 1900’s (or late 1800’s, I’m fuzzy on the details). My great-grandmother passed away when I was a toddler, but I vaguely remember that she spoke broken English and had a bird. She was a determined, strong woman who raised four kids and divorced her abusive husband-a very big deal to an Italian Catholic at that time. But she did what she had to, and they never had much, but they had what was important-lots of family. And pasta. I’m assuming the last part, but I know when I was growing up we always had a lot of that at my grandma’s.

I don’t know a whole lot about her youth, and I can’t begin to imagine what life was like for my grandma, the eldest of her siblings, helping raise the others. I figure things got pretty harsh at times, especially during the Depression. But they made it through, by the grace of God and by doing what was neccesary.

In her twenties, my grandma met and married my grandpa. They had three kids, one of which is my mother. The other two are my uncles. In his infancy, my grandmother’s middle son suffered an illness that left him disabled. I don’t even think my grandparents were given a clear answer at the time, but all I know is that my uncle suffered a high fever that damaged his young brain.

My grandmother spent days, weeks, months, years in and out of the hospital with my uncle-the very same hospital I am at now with Doodles. My uncle required many surgeries that spanned into his late teens or early twenties. She was told he wouldn’t walk or speak, but he does both-albeit with difficulty-and although age is taking the inevitable toll, he is able to participate in daily activities. He’s nearing sixty, and my grandmother-nearing eighty-six-is still caring for him.

I’ve learned that my grandmother has been inconsolable since she learned of Doodles’s illness, and I understand why. She is a mother, and she has been where I am, struggling, hoping, praying, begging for her son’s life. I am nearly her carbon copy, experiencing the same heartache, uncertainties, and longing that she did so many years ago. She is the only person near to me now that understands what it is to be me now, understands how it is to be the mother of a child with a life threatening and debilitating condition. She is one of an innumerable amount of reasons that I refuse to walk with my head down during this difficult time.

My grandmother’s youngest child is none other than my own mom. I don’t know how to begin to describe this woman. She is vibrant, exuberant, hard-working, no-holds-barred, badass, outspoken, lively, extroverted, loving, level-headed, funny, optimistic, and just a little quirky. She is the reason I love reading and writing. She is the reason I am everything I am today. I am proud to be her daughter. She is the reason I am proud to be a woman.

In this chapter of my life, my mother is my best-friend. Not always the case. There were those teenage years when I was becoming my own independent person, and we butted heads-a lot. But as an adult, and especially as a mother, I know she was kicking my ass down the right path. Figuratively, of course.

She is the woman who first introduced me to Stephen King and Edgar Allan Poe and Hitchcock and old time movie monsters and scary movies and all the frightfully delightful things I adore. She is the woman who nurtured my imagination and creativity. She’s the woman with whom I sat on so many Saturday mornings or evenings watching pitifully horrible B movies and laughing our asses off (still do). She is the woman I would be if I were a better woman.

Lastly, I want to write about my late paternal grandmother. Like my maternal grandmother, I know little of her childhood, but I do know she was born and raised in rural Louisiana on a farm. At some point, they moved to the city, then the suburbs. She married my grandfather and they had three sons, one of which is, of course, my father.

I understand that in her youth she suffered an ailment in her legs that required the wearing of braces, and she continued to have some problems into adulthood. She worked hard to raise her kids while my grandfather worked shift work at a local refinery.

After the floods of Hurricane Katrina claimed their home, my grandparents moved back to the country to live out their twilight years. My grandmother became ill and didn’t recover, passing away just over a month before Doodles was born. She was so excited to have a great-grandchild, and if there is an afterlife, maybe she’s there watching us now and sending positive energy our way.

I love these women. They have shaped who I am. They deserve recognition everyday. And I thank them.