Limited Freedom

Robot Boy & The Intrusive Interloper

fountain

RB had a fever yesterday and we had to return to the ER at CHNOLA. Everything seems fine, but he’s being treated with antibiotics for safety reasons since some bacteria came back in his tracheostomy. It’s a bacteria he’s been colonized with and will always be there. His oncology team advised us that next time he has a fever, we won’t have to come to the ER. He can be treated for an illness by his regular pediatrician as he is no longer a cancer patient. After his next scan (which is this month) they are going to schedule a surgery to remove his port. All of his counts are normal and he is completely recovered from the chemo and radiation.

Although he has a lot of physical disabilities still (many of which he is overcoming slowly, and with therapy;some from which he will never recover). Things are by no…

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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)

Achievment Attained: Zombie

New Orleans City Park the day prior to the Zombie Run 5K
New Orleans City Park the day prior to the Zombie Run 5K

As those of you who’ve been with me longest know, my interests lean toward the macabre. I’ve been interested in horror films, books, and culture for as long as I can remember. My mother even tells stories of my napping in my toy box as a kid and pretending it was my coffin (because I was a vampire, of course). It probably goes without saying that many of my friends share my interests. Like most nerds belonging to any genre, we would have lengthy discussions about certain things in movies and what not, and one of those things we’d discuss in-depth was the matter of zombie-ism. These were days long before the zombie culture was accepted in the mainstream-or maybe it’s just that more of us have crawled from our crypts to claim our rightful place among everyone else. During these discussions, I’d always declare that in the case of a zombie invasion (this was before the term “zombie apocalypse” was even widely used or even coined, possibly), I would want to be a zombie. I’d rather be one than be eaten by one, you see. Because zombies scare THE EVER LIVING SHIT OUT OF ME! I won’t lie. If I watch a zombie movie, I WILL without doubt have nightmares. I’ve had many detailed nightmares about zombies, and I will probably have nightmares tonight just writing about zombies right now. I love to watch zombie/horror movies and read scary stories (and write them!), but in real life, I am a big old ‘fraidy cat once the sun goes down. I was, until very recently, terrified of the dark. When I used to work dayshift, and I had to leave early in the morning while everything was quiet and everyone was still asleep, I would get into my car with a quickness as I would terrify myself with the thought of a Dawn of the Dead scenario. The problem with zombies is that they’re like cockroaches. If you see one, you know there are more.

zombie_sign

For some reason which I can’t pinpoint, over the last several years zombie culture has become quite popular. Not only with horror fans, but with people who wouldn’t normally be into “that kind of thing.” I don’t know why this happened, but as you can all imagine after having read my first paragraph that my brain constantly being bombarded with zombie related information caused me some unease. It did in the beginning, then like most things, I became immune to the constant bombardment, and the nightmares stopped-mostly. I would like to note that in my nightmares, I have always been the victor. There hasn’t been one yet in which I was the victim of a zombie bite, although in one my husband was bitten, and it ended with us shutting out the zombie hoards and my looking at him with the knowledge that I would have to kill him. I mean. It’s the only way. Also, I was once a zombie crime scene investigator who had to eat the remains of the victims of crimes in order to discover their means of death and catch their killers. Or maybe I was just hungry. I dunno. Analyze that, okay.

La moi
La moi

When I was diagnosed with fibromyalgia in late 2012, and after battling pediatric brain cancer alongside my son for nearly ten months, I was almost totally unable to do more than move around a little and then lie back down again. I was fatigued beyond explanation, and I was in pain. Lots of it. I decided it was time to get serious about my health. I knew I wouldn’t be able to care for my son otherwise. My body was in a very bad state then, physically, mentally, emotionally. My rheumatologist prescribed me medicine to help control the fibro. I started doing yoga again. I started eating well again. Eventually, and slowly with time, I was able to do more than yoga (and am doing much better with my yoga poses now). I’ve lost a significant amount of weight.

Somewhere in last few months information came across my Facebook feed about a 5K zombie run. I’d never done a 5k, and I knew I wouldn’t be able to really run a 5K (not yet, anyway). Even though I am getting into much better shape, I have to be realistic about my limitations. I decided, though, there was no better opportunity for me to be a zombie and set a goal for myself. After all, folks with fibromyalgia feel like their stricken with rigor mortis most of the time, anyway. I know I do. I am fortunate in that although I do suffer from fibromyalgia, I don’t suffer from some other-and far more detrimental-ailments that people with fibromyalgia can have. Lupus and rheumatoid arthritis are just two of those. I do have osteoarthritis, early onset of osteoporosis, and mild scoliosis. But, they’re not going to be crippling in the way rheumatoid arthritis or other forms of rheumatic diseases are. Fibromyalgia, for what it’s worth, doesn’t get worse over time. This keeps me positive that I can give myself a better quality of life by taking care of myself-eating right, exercising, sleeping. I stopped drinking (sad face), but it really is for the best, and as the bottle of Amaretto in my pantry whispers my name, I remind it that not only have I stopped drinking but I’ve also given up eating or drinking anything with a lot of carbs after a certain time in the day. (Bad Amaretto! Bad! Bad!) I digress.

Pre-zombie. We had to arrive at 5am for our transformation, so I had to leave home at 3:30am. Yes, I did this willingly.
Pre-zombie. We had to arrive at 5am for our transformation, so I had to leave home at 3:30am. Yes, I did this willingly.

I wanted to register for the zombie run because it seemed like fun and I got to set a goal for myself and I got to be a zombie. Win. Win. Win. During the months leading up to the Zombie Run, I trained hard. I knew if I didn’t work hard that I wouldn’t even be able to endure the heat and running after the, well, runners. (Honestly, I let a lot of them go because really, they were in great shape. I told one guy, “I’m not out-running you. Go ahead.” He had like 2% body fat and looked like he ran everywhere just for fun. Free pass from this zombie.) And although I sprained my ankle during that time, I noticed that it became easier for me to lift my son and that I was in less pain after moving him and his equipment around. My fatigue has all but diminished, and I really only sleep in the day when I don’t get enough sleep the night before. (The CPAP machine helps a lot, although it’s left a bald spot on my baldness. In other words, the strap that goes across the top of my head has rubbed some of the hair completely away. I sleep with a handkerchief between it and my scalp now, but it might be too late for that one spot.)

My bald is bald. It's not too bad, but it is noticeable and I can feel the difference when I touch my head. It's like a big divot. On my head.
My bald is bald. It’s not too bad, but it is noticeable, and I can feel the difference when I touch my head. It’s like a big divot. On my head.

Zombie Run day came, and I was up with the vampires at 3am since we had to arrive at City Park at 5am. I live a good ninety minutes away. I drank a protein shake with some yogurt and did some yoga and went on my way. My friend, with whom I’d have the zombie discussions years ago, and her stepson joined me for the race. We didn’t really know what all to expect, but we knew some stuff. Like we got professional zombie make-overs from some of the best make-up artists in the area.

makeup
Me getting airbrushed
I gave the artist complete creative freedom. I told her she could do something on my head. She was all about it.
I gave the artist complete creative freedom. I told her she could do something on my head. She was all about it.
Look out for those fat zombies. They really like a lot of braaaaaaiiiinnnnsss.
Look out for those fat zombies. They really like a lot of braaaaaaiiiinnnnsss.
xie&masonzombies
Xie & Mason zombies

The artist who did my make-up works at the 13th Gate, a haunted house attraction located in Baton Rouge.

She did a pretty awesome job, I'd say!
She did a pretty awesome job, I’d say!
zombieface2
Post-race. My shirt was white. As you can see, it’s a little bloody.

There were also members from the House of Shock involved in our zombie training and blood spattering. When I was up to be spattered, they said no one wanted to roll around in the blood on the big blue tarp that was catching the burgundy puddles. So, of course, I said I would. Then my friend’s stepson did it, too. Because we’re cool like that. It was fun, but I had fake blood squishing in places that were bordering on unsanitary. Still totally worth it.

Blood spattering station
Blood spattering station

While we knew we wouldn’t be running the entire 5K behind the runners, we didn’t know where we’d be or that we’d be set in a cordoned off area and not allowed to leave our assigned zombie stations. We got onto a bus and were sent to a part of the park that is just an open field, and it made for some really good chases. I did a lot more running and with not as much effort as I thought I would. I survived the heat and the physical activity, although after a few hours we’d transformed from Dawn of the Dead super-bath salts-zombies to straggling, moaning, slow-moving zombies. All in all, I was very proud of myself for being able to actually chase and keep up with some people. I felt bad going for the kids, so I just hung back and some people were visibly exhausted so I told them to hide behind a tree because I might be an undead brain eating abomination, but I’m still sympathetic.

walkingzombie2walkingzombieIt’s suffice to say we had a great time. We were too tired and hungry to stay around for the after race activities, so we went out to eat where we freaked out no more than everyone. (One lady thought we’d been in a bad accident. I guess she feels the Golden Corral’s breakfast buffet is just that good, and it’s on the way to the hospital anyways?) It was my first time doing anything that physical, at least since I was a kid when I ran around for the hell of it all the time just because, and I was famished beyond words. I was glad the breakfast buffet had two types of bacon (yes TWO types). I was a good girl, though, and my second plate consisted mainly of fruit, even though I was eyeing that chocolate fountain pretty hard.

I just look like I still have zombie make-up on because I was awake for like 20 hours.
I just look like I still have zombie make-up on because I was awake for like 20 hours.

I definitely plan to attend next year if there is another Zombie Run. As a zombie, of course. I’m also pretty interested in another 5K that is taking place just two days before my birthday, and it looks pretty intense. The Nola Zombi  run is set-up with a military style obstacle course. I haven’t registered, yet. Yet. According to their website, I still have 84 days 1 hour 58 minutes and 51 seconds.

allthreezombies
Zombies do to where sunglasses. A lady tried to steal mine. After I left them in the grass on accident after someone took our photo, my friend spotted them on the lady’s head. She was a real life zombie it seemed, because she was zoned out on something. I got the sunglasses back though. Because they were $4, and zombie don’t play that.

Letter to St. Jude Children’s Hospital

photo

In early 2012, we reached out to St. Jude Children’s Hospital for our son RB (if this is your first visit, read about him here). The doctors at CHNOLA were hesitant to treat RB as they weren’t sure if he was “salvageable” (the word used by the doctor who advised us of this). We were told by a friend we should request a transfer to St. Jude. We did, but the staff at CHNOLA dragged their feet on calling with the referral until we went to administration about the issue. I personally spoke to the nurse coordinator of brain tumor patients at St. Jude’s.

After some days, and apparent discussions involving who knows what between St. Jude’s doctors and CHNOLA’s doctors, St. Jude determined RB could not be treated there as he did not meet their “criteria” (their word). Because he was on a ventilator, St. Jude would not take him. He is home now, on a home ventilator, and recovering well- after CHNOLA decided they could, in fact, take a stab at treating our child.

The day before we learned of RB’s cancer, my husband held a benefit for St. Jude Children’s Hospital at the business he once owned before it was dissolved due to lack of funds to keep it running. We’d donated to St. Jude for a long time before RB’s illness (We didn’t know of St. Baldrick’s Foundation then). We did so because St. Jude’s does help many children and families, and we do not deny that, but since we were refused their services and remained at CHNOLA, we have incurred-as one can imagine-many expenses that prevent us from being able to donate extra money each month. We called St. Jude and explained to them our monthly scheduled donations would have to stop and we explained why (because we were of course interrogated on our decision to stop donating). This, however, has not stopped St. Jude Children’s Hospital from mailing us solicitations asking for donations. Today I received yet another letter from their institution requesting donations, along with the letter detailing how terrible it is for kids and families that suffer through this terrible disease (OH REALLY? Didn’t notice!).  Instead of tossing it into the burn pile as I’d usually have done, I decided to send them a letter.

 

I want to make it clear that I do not want anyone to stop donating to St. Jude Children’s Hospital because of our experience.

They do a lot for children and families. They just decided not to help ours. There are foundations, such as the American Cancer Society, that I have decided are not worth donating to as they spend more on solicitation than funding research, and they spend next to nothing on pediatric cancer research. Because of our own situation, we have decided to dedicate our time and donations to St. Baldrick’s Foundation, an organization that spends the most of any cancer research foundation toward actual research. Their donations are used strictly to fund pediatric cancer research, something that is far underfunded. Only the U.S. Government spends more toward pediatric cancer research, and St. Baldrick’s uses over 80% of each dollar donated to funding research, unlike the ACS.

2013-03-23 18.10.25
I’m bald and badass for St. Baldrick’s

At any rate, I would like to share with you all the letter I wrote to St. Jude Children’s Hospital in regards to their constant solicitation.

 

“Dear St. Jude Children’s Hospital,

 

Our family wants nothing more than to help kids with cancer and their families. Our own son is in recovery from brain cancer for which he was treated at Children’s Hospital New Orleans. We would like to continue to donate to institutions such as St. Jude’s to help assist children with this devastating illness, however, when we reached out to your hospital for assistance, your hospital denied our son treatment because he didn’t meet the “criteria.” Because St. Jude Children’s Hospital refused us assistance, we have-as you may imagine-many unpaid medical bills. Therefore, we are not able to donate extra money. We would appreciate it if your institution would cease sending us mail asking for donations. Use the money instead for funds related to treating the sick children at your hospital and for assisting their families. My best regards and prayers to the children and families of St. Jude Children’s Hospital who are suffering through the same tremendously devastating and life-changing event as our family has been enduring for these last fourteen months. We appreciate your cooperation in not sending us more mail asking for donations.

 

Thank You,

 

Donnell C Jeansonne”

Ready to go. Unlikely to make a difference. But ready to go anyways.
Ready to go. Unlikely to make a difference. But ready to go anyways.

 

Pressure

I get about one day a week off from my nearly 24/7 duties at Children’s Hospital. (If you’re just joining us, you can read about all that here.) This day is Friday, when my mom comes to stay with Robot Boy so I can go home, have a real dinner with my husband, decompress, and sleep. My mom works most Fridays, and she is wonderful enough to come after work and sleep at the hospital. Well, I shouldn’t really say “sleep at the hospital” because anyone whose ever been in a hospital or stayed with a loved one in a hospital knows you don’t sleep. Not more than an hour or so at a time, anyway.

It’s suffice to say these evenings I get away from the hospital are sacrosanct. I do my best to get home in enough time to go out to dinner with my husband and at least spend some time with him before he has to go to bed, as he works Saturdays usually. My home is approximately an hour and a half from the hospital, depending on traffic. The drive is hardly bothersome under normal conditions. For the last five years, I’ve had an hour commute to and from work-sometimes before and after working 12+ hours. I don’t mind driving, as long as the traffic is moving and there aren’t very many fucking assholes inconsiderate drivers on the road. I turn up the radio and exercise my vocal chords.

I sound nothing like Gonzo while singing this medley.

As I’ve said, under normal circumstances, I don’t mind the drive. However today, today my decisions led to me into very unusual driving conditions for my Friday night of freedom. My mom didn’t work this Friday, and she was at the hospital earlier than usual. Instead of leaving the hospital shortly after she arrived, I chose to stay and visit a while. I also have a terrible time tearing myself away from RB. Especially on nights like tonight, when he was watching me pack my bag, knowing that I was leaving. Not that he doesn’t love his grandma. He is very excited when she visits, but Mom is the safety net. Mom is there to make sure nothing goes awry. And also Mom knows-or thinks she knows-exactly what he wants most of the time.

I don’t regret my decision to stay, but I was less than pleased to be stuck in the horrendous traffic which accumulated at the precise moment I left the hospital’s parking lot. I made the unwise decision to leave at exactly 5p.m. on a Friday night. Oh and also on the night of a Hornets game. I sat on the same street for no less than 30 minutes. Someone in a black Yukon that’s license number I did not memorize for use in future voodoo ceremonies nearly caused an accident by purposely skirting around me while I was clearing changing lanes to avoid an 18-wheeler. I hardly berated the driver before he/she sped away.

Photo c/o Microsoft Office Free Clipart

I finally made it to the interstate, only to discover the traffic was almost as bad. With my bladder’s fluid gauge on full, I approached the High Rise, which any native knows is another traffic nightmare. At any rate, I finally got through the city and crossed Lake Pontchartrain en route to my home.

I exited as soon as possible and hit a gas station to fill up and utilize their surprisingly clean restrooms. I bought an enormous coffee (and a six-pack) and returned to the road. Instead of heading back to the interstate, I remained on the highway, which proved to be an unfortunate decision since everyone else in the state also decided to do the same thing on the same road. I was stuck in more traffic. But, with an empty bladder, a serious caffeine high, and good music, my two and a half hours in snarling traffic already seemed much less unpleasant, and at the exact moment I was contemplating driving through servitudes and on private property, the Muses graced me with a rather fitting song on the radio. . .

This song describes my entire life right now.”Pressure pushing down on me/Pressing down on you/No man asked for/Under pressure /That burns a building down/Splits a family in two/Puts people on streets.”

I, of course, recognized the fortuity. As I began to sing (both David Bowie and Freddie Mercury’s parts in perfect pitch, I might add), my foul mood was interrupted by tolerance and stoicism. What importance really, in the grande scheme of things (if there is one) holds traffic? I felt most uplifted: “Pray tomorrow gets me higher, high, high!”

Perhaps it was the music, or my utter madness, or the realization that there is no use being upset when you can grin and enjoy a major caffeine rush, or perhaps it was all these things, but I was wearing a smile and feeling so much better. “Cause love’s such an old-fashioned word/And love dares you to care for/The people on the edge of the Night/And love dares you to change our way of/Caring about ourselves.”

When the song ended, I felt like I needed a decent follow-up. You can’t just come down off a high like that. With my iPod on shuffle, I skipped the next two songs until I found a great song to accompany the first.

This is the cutest video ever.

“That time will come/One day you’ll see/When we can all be  friends.”

This interestingly unrelated piece of free clipart c/o none other than Microsoft Office

Under Pressure was written and performed by Queen & David Bowie and appeared on Queen’s 1982 album Hot Space.

The Miracle was written and performed by Queen and appeared on their 1989 album of the same name. The four boys from the video are Paul Howard as Brian May, James Currie as John Deacon, Adam Gladdish as Roger Taylor, and Ross McCall as Freddie Mercury.

Bohemian Rhapsody was written by Freddie Mercury and performed by Queen. It appeared on their 1975 album A Night at the Opera (titled after the Marx Brothers’ movie of the same name).

The Muppets were created by Jim Henson and currently belong to The Walt Disney Company.