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.

Strength

Image courtesy of Victor Habbick / FreeDigitalPhotos.net
Image courtesy of Victor Habbick / FreeDigitalPhotos.net

Today is the anniversaries of both Hurricane Katrina and Hurricane Isaac, two storms that wreaked complete havoc in my state. Isaac less than Katrina, but still enough that lives and properties were lost and many things have still not been regained or re-established. Lots of people are posting remembrances today, but it’s a little more difficult for me to broach the subject. I was there, for work. With my husband, as he also worked for the same agency I did, and with my thin blue line family. Here is the short version I posted to my Facebook friends:

“8 years ago today I was on the front lines of one of the nation’s biggest disasters. Everything went to shit then got better. Trust that it’s something I won’t forget. The end.”

There is no way to describe the situation other than to say everything was terrible. If you’ve never experienced a natural disaster of that magnitude (which many folks around our planet have), then it’s hard to explain the feeling of loss that accompanies witnessing your entire life taken in as many minutes as years you’ve lived. Your town is gone. Your home is gone. Maybe your job is gone. And for the least fortunate people, your family members and friends are gone.

Image courtesy of Danilo Rizzuti / FreeDigitalPhotos.net
Image courtesy of Danilo Rizzuti / FreeDigitalPhotos.net

I feel fortunate. Not because today I will be experiencing the most severe PTSD ever, but because of what has been gained post-K. I’ve got a new home, new stuff, some of the old stuff that was salvageable( albeit a small amount), but most importantly I’ve gained a sense of what is most meaningful-the people I still have in my life. I was fortunate that I didn’t lose any family, even my cat and dog survived. The snake was lost, but I’m sure she slithered away in the water and is enjoying life in the woods somewhere living the life a corn snake deserves. I had a roof over my head, even though for some time that roof was that of the Cajun Queen, a paddle boat meant for short tours up and down the Mississippi River (Nothing like taking a shower with a hose on the deck of a boat in mid-October to wake you up!), and later a decommissioned ferry-boat where my husband and I shared bunk beds in an 8X8 cabin.

Trailer we lived in post-K from 2005-2007.
Trailer we lived in post-K from 2005-2007. We moved on up from the boat accommodations.
Me at the trailer in which we worked for many, many months post-K
Me at the trailer in which we worked for many, many months post-K

My thoughts and prayers and moments of silence go most to the less fortunate who did lose family members-some lost many in a moment, the people who couldn’t bear the burden that comes following such a travesty and took their own lives, those who weren’t able to recover and pined away for what was, and those who lived horrors worse than I and that I cannot even fathom. This empathy is not reserved for victims of Katrina or Isaac or any one particular thing. So many terrible events occur around the planet, and I agree with John Donne who wrote the words “No man is an island.”

I forget what's going on here, but it's something.
I forget what’s going on here, but it’s something.

I’ve long tried to accept the proverbial phrase “less is more”, and nothing has taught me to do that like Hurricane Katrina. What is stuff but meaningless collections of mass that can be lost in a matter of seconds? Katrina taught me what is most important to survival-physically, psychologically, and spiritually. My old home is gone, but I have a new home now. Man, am I thankful for that! I have food on my plate everyday. I have lots of great friends and family who are always there to help me, especially during the difficult times we more recently experienced after RB was diagnosed at 2 years old with brain cancer. Here is another short summary I shared on Facebook of what I was doing last year during Hurricane Isaac:

“A year ago today I was in Children’s Hospital, where we’d been for 8 months by then, during Isaac, in the dark going between trying to get weather updates on my phone and comforting RB who was still going through chemotherapy treatments at the time. Now we’re home, again things got better eventually. The end.”

Things have gotten better. RB is making progress everyday, and his scans have been stable for nearly a year. His next MRI is in September. There are no signs yet of the expected regression caused by the radiation and chemotherapy. He will soon get a homebound teacher and therapists who will come to our home and take over what I’ve been working on since February. He’s getting a stander and braces to help straighten his legs. We’re traveling down a very long path here, but there is an exit, and at this time, it is bathed in light.

RB in the physical therapy gym at CHNOLA. He will he receive a stander similar to this one.
RB in the physical therapy gym at CHNOLA. He will he receive a stander similar to this one.

So while today will be a day of reflection and bad memories, I would rather look forward than back. I would like to focus not on what was lost, but what has been gained, on what we’ve overcome and on our strength.

Hurricane Katrina Memorial  St Bernard, La. Photo by Edward via NOLA.com (http://photos.nola.com/photogallery/2010/08/st_bernard_parish_katrina_memo.html)
Hurricane Katrina Memorial
Yscloskey St Bernard, La.
Photo by Edward via NOLA.com (http://photos.nola.com/photogallery/2010/08/st_bernard_parish_katrina_memo.html)

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.

What Shall I Do With My Hair?

Oh yeah. Not a damn thing! Because I was shorn this evening in the name of pediatric cancer research.
20130324-112842.jpg

I feel great, but exhausted.

I will follow up with a proper post, but I will leave you tonight with this.

A video of The Lucky Mom shaving my head.

Donnell Gets Her Head Shaved

It was loads of fun, and for such a great cause. We more than doubled our goal. And our team is showing interest in making this a yearly event. I’m down.

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Pre-shave with The Lucky Mom

Hairless and Hopeful

Presently on the way to have my head shaved. Why would I do this? Well, I’ll explain in case you’re just tuning in.

See, there’s a foundation called St. Baldrick’s Foundation. They collect funds toward pediatric cancer research. They are the only nonprofit that dedicates all funds to ped cancer research, and they are only second to the federal government in funding pediatric cancer.

Why go bald? I’m doing it to raise donations and awareness. But also in solidarity with kids with cancer who lose their hair to chemo and radiation. One of those kids is my own son Robot Boy.

He’s currently-by definiton-in remission. The mass entombed within his brain stem and spinal cord hasn’t changed in five months, and so we are assuming and hoping that what remains is only scar tissue. There is no way to know. All we can do is monitor him, and wait.

Why should you help this cause? Well, if the fact that it helps fund life saving research that can save kids’ lives and hopefully conquer kids’ cancer isn’t enough, then I don’t know what to tell you. But I can tell you that kids’ cancer is the least funded of all cancers, and funds for research are desperately needed.

I can only ask that you consider helping our cause, and please visit our team’s link. You don’t have to shave to help a kid with cancer. You don’t have to donate a lot. Dollars add to more dollars.

Team Robot For St. Baldrick’s Foundation

Point. Click. Donate.