Sad Week

There's a photo-blog that's going around the internet where man documents his wife's (ultimately loosing) battle with breast cancer.  If you haven't seen it, you can find it here.  It's stunning.  The photography alone is beautiful but the emotions, the struggle, the pain and the sadness that so many cancer patients and their loved ones experience, it breaks your heart and it took my breath away.

In some ways the quiet, heart-wrenching sadness of this blog seems to sum up this past week at work for me. People tend to assume that my work is sad when actually that is more the exception than the rule, so I'm not sure why this week at work has felt so sad to me when nothing particularly sad has happened.  

I've started changing gears at work, moving from acute processes that are terrible and impossible to deny but fast, to more chronic processes like myelofibrosis and multiple myeloma that are just as terrible but slower, different.  The early stages of these chronic diseases can be a little ambiguous, patients overall feel fine and they can pretend that it isn't happening, that they aren't sick. I don't want to call it false hope but there's a hard reality that comes with chronic illness. I guess this week I learned how difficult it is to be the reminder of reality.  There's only so many times you can be asked "how long will I need this treatment" and wait for it to hit home when I have to say: until it stops working.  I know that I am far from the only person saying this. I'm often in the room when they hear it from their doctor, but I'm also the easiest person to get on the phone and the person with the time to say it over and over again.  As many times as they need to ask it, I will answer it. 

Over the past five years I've seen a lot and I've learned a lot.  I'm sure that  I'll learn how to do this too.  I'll learn how to do this and I'll even learn to find the honor in it.  This week though I'm still learning and I'm a little overwhelmed by the sadness. 

After a week like this I need a ticklish baby penguin named Cookie, and thanks to the miracle that is the internet, I have it!

 

http://youtu.be/Wz92ANMTR2M

 

 





Kaitlyn Grace

On April 16, 2012, Kaitlyn Grace Kieszek left us.
I lit a candle that night to help light her way on the path to wherever we go from here and I said a prayer so that she might be reassured on her journey by familiar voices assuring her that there was nothing to fear.

Usually I find comfort in admitting that I don't know what happens when we die, in giving that up to someone or something greater than myself.  I am finding small comfort in admitting that I don't understand why Kaitlyn was taken from her family so young, why her bright light was taken from us all.

What I do know is that Kaitlyn, you are missed and even in your absence you are loved dearly. Your near constant smile, your charisma and and your determination to not only achieve but to simultaneously find joy in those efforts, has touched and inspired me.  I hold you close to my heart.

I will miss watching you grow but I am comforted in knowing that you are at peace and hopefully enjoying the Popsicles and swimming pools that I am certain were waiting for you.





Muggles Rejoice!!

FINALLY!! 

The Florida Primaries

When Mitt Romney won the Florida Republican primary, I have to admit, I was a bit relieved.  Don't get me wrong, I'm not even close what you would call a "Romney Fan", and not being a Republican I didn't get a say in this one.  It's just that I don't think that I can handle living in a state that thinks Newt Gingrich is an acceptable candidate for President of the United States.(Seriously, when Congress, CONGRESS censures you for ethics violations?!  You're up to some pretty nix level shit and I truly believe that if we are going to impeach a sitting President for sexual indiscretions, we should raise our standards for Presidential nominees high enough to rule out those censured for ethics violations.)

So I was sitting there thinking, okay - don't love the guy but if it has to be one of them...might as well be him.  Then I heard his victory speech.


"While we celebrate this victory, we must not forget what this election is really about ..."

What? Getting the economy moving?  Keeping Americans safe? Providing Americans with solid, fair health care? Supporting our educational system so that young Americans receive an education that prepares them to be competitive in the world market?

Nope

"While we celebrate this victory, we must not forget what this election is really about: defeating Barack Obama."

It's the Iowa Caucus all over again. 

I'm not so naive to think that the primaries aren't about the Republican party finding a candidate who can defeat President Obama, but it should be about so much more than just winning.  It's about what you're going to do with that win and the fact that they're not even pretending that it's about more that that, I find it disgusting and disheartening. 

oh Jeffery...

"When life gives you a Jeffery, stroke the furry wall" 

- Get Him to the Greek

Life handed me a Jeffery this week, thankfully not in the form of hallucinogen (or maybe not so thankfully?) but rather in the form an alarmingly needy person whose lack of social skills made me want to punch things.

Occasionally I worry about my proclivity towards physical violence when in the midst of frustrating situations, then I remembered that I've yet to ever indulge in these urges and I find that comforting.  I suspect that it's not the violence so much as the endorphins that I get from something intensely physical like kick boxing or running that I'm actually craving in these moments, a craving that somehow ends up translating into an itchy left foot.  But, I digress. Around three in the afternoon I put my head down on my desk (which did not in fact stem the stream of incessant requests) and wondered "why the hell do I do this?"  

I do this because of this: 

January 25, 2011

What you see before you, is all of the data that I collected from my first study ever.  It's the first therapeutic study I was ever in charge of,  from set-up to close-out it was mine: my responsibility and my problem.  Add my shelves of data to that of a hundred other sites across the world and do you know what you get?  You get an IND that was approved by the FDA for open-label use.  The drug that we were testing in this study has gone on to be approved by the FDA and my patients who were receiving it on study (translation: with mildly annoying strings attached) are no receiving it open-label (translation: free of strings.)

I was (a very small) part of bringing a drug from the "maybe this might help" stage, to the "yeah, this helps and we're giving it to people" stage.

Jeffery's be damned, THIS is why I do this.  The sculpture art is just a perk.

RAKSAB*

The Friday before Wes moved out, I had to be at work for a Site Initiation Visit.  Twelve hours after we decided he would be leaving and forty eight hours before he actually left, it goes down as one of the hardest days I've ever had to face.  That's the problem with work though, it doesn't take a hiatus to accommodate a crumbling personal life.  I'd like to say that I rallied like a champ on this day but I think realistically (and optimistically) the best that can be said is that I pulled it together.  Site Initiations are not the most active of days, they require a lot of sitting around, answering questions as they arise and basically watching someone else check things of their list. It's not the kind of day that you can lose yourself in being busy and it's THE WORST kind of day to have when your head is a dark, twisty, sad place.

We broke for lunch and I found myself standing alone in the conference room frantically wiping away tears and trying to muster the strength to wrap myself tightly enough around my aching heart to regain some measure of control.  As I stood in that corner, Erica, one of the Clinic PCA's walked in, took both of my damp hands in hers, looked me straight in the eye and said: "Anna, I don't know what it is, but all you have to do is keep breathing until it's over." She gave me a hug and walked back out into the hallway to get on with her day.

She never mentioned it again and has never asked what was wrong or asked for any kind of explanation.  It was a moment of kindness that got me through a really terrible day and gesture that I probably won't ever forget. 

I don't know why I feel compelled to share this now, I don't even know why I remembered it this morning.  Maybe enough time has passed that I can see it a little more clearly or maybe it just needed to be remembered out loud.

*RAKSAB: Random Acts of Kindness, Senseless Acts of Beauty 

If real politicians could talk like Aaron Sorkin

  "I want women to have help from the government. I want women to earn what men earn. I want everyone to earn enough so that everyone can make the right choice for their family, and after that, it's none of your business who stays home and who goes to work. You don't know more about raising a family than I do."

...then maybe I'd feel less discouraged about this upcoming election.

A reason to be grateful

I feel like I should knock on wood before I say this but it is the season for gratitude and so here I go: I love what I do.  I don't always love my job and there are certainly days that playing hookie and going to the beach sounds uhh-mazing but at the end of the day, I love what I my job lets me do.  I fell blindly into it over four years ago, just short of kicking and screaming, yet it seems to have fallen on the "disproportionately fortuitous accidents" life list.  The people that I have met, the opportunities that I've been given and the things that I've learned have exceeded every expectation that I had when I got here. 

It's not your average job (and by average, I mean one the people tell you about when you're in school: lawyer, doctor, teacher etc.)  and there's nothing in my education or life before coming here that would logically lead to this job, so I shouldn't be surprised when people really don't know what I do. I certainly didn't know what it was all about even when I took the job, and yet I am surprised.  I am surprised that people so close to me, who know so much about me, don't know or understand this part of my life that is so important and such a huge part of who I am.  The only explanation that I can think of for this is that I haven't told them.  I don't know where along the way I decided that my vague "clinical research" answer to the question of what do do would result in people understanding what I do each day but I guess I did. I also don't often blog about it very often, partially because there's a lot of confidentiality issues to be careful of and mostly because while getting fired for her blog worked out pretty well for Dooce, I suspect that it might not be quite so propitious for me.

Still, if I want people to know what I do and (more importantly) why it's important to me, I'm going to have to start talking / typing.  While getting fired isn't on my list of things to do, I think the following story is  relatively safe and, at least to me, speaks to the heart of what I do.  Seems like a good a place as any to start. 


 .....

I was standing in a patient room the other day with one of my favorite attending physicians (since our office has already nicknamed him thus, we shall call him Pinky) and the patient asked him why he got into the research side of cancer treatment.  His answer:

"I think how we treat these diseases is barbaric and I wanted to find a better way."

Now, that's NOT why I got into this area (I  really just needed a job) but it IS why I've stayed.  

Since I took this job, I've heard many times over, from people both close to me and not so close at all, that they disapprove of clinical research.  They disapprove of the pharmaceutical companies and somehow by association, the role that I play in helping them to develop their drugs.  I've been told that what I do it paramount to torturing people, that these companies hold the cures for cancer in the labs but don't use them because there's no money in a cure.  I've been told that clinical research is "crap."  I respectfully disagree. 

While I can't speak for the huge pharmaceutical conglomerates and the thousands upon thousands of people they employ,  I can say that the people that I've met: the physicians heading the trials, the study teams who put together the thousands of little pieces necessary to make a large scale trial run efficiently and meaningfully, the coordinators who pull it all together at the patient level and the patients who so generously enroll, we're all here in the hopes of finding a better way. And we're not doing it by turning our Facebook pictures pink, green or orange for a day.  We're not spamming our friends and family with chain emails about how many lives cancer took last year and isn't a shame. We show up every day and we work. We work on some exciting things, we work on many mundane things, we work on ideas made reality by people  far smarter than ourselves.   I'm not a doctor and I'm not a nurse but my piece of the puzzle is important, it has value and it's worth doing.

So as I stood in this patients room listening to Pinky all I could think was "yeah...yeah, that IS what I'm a part of and I'm proud of it dammit!"

How cool is it that I get to do this?  That I get to be part of finding the better way?  Damn cool and damn lucky if I can say so myself. :-)

Light the Night

The Leukemia & Lymphoma Society Mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.

All of the treatments that we currently have for these diseases started out once as research and were developed through clinical trials,  for this reason LLS is a HUGE supporter of heme/malignancy clinical research.  They have directly supported several of the trials (both purely research based and with therapeutic intervention) that I have been involved with over the past four years and are continuing to do so today.

Initially I decided to walk in LLS's Light the Night Walk mainly to raise awareness these cancers.  With my Mom and sister raising money for breast cancer by walking 60 miles in three days, it seemed a little pathetic to be hitting people up for walking a few miles around UF campus with a lighted balloon.  Still, remembering what my mom once said about how generous people are when asked, I sent out a fundraising email to my friends and family.  I expected that a few people would donate a few dollars here and there, hopefully I'd make my $100 goal.   All I can say is that I was beyond blown away.  My original goal was not only met but exceeded before twenty-four hours had passed and for days after, I opened my email each morning and stared in amazement at the donations people had made over the previous night.  The generosity shown by my friends and family was astounding and touching because this cause means so very much to me and every dollar donated makes a difference.  100% of what was donated goes to the Leukemia & Lymphoma Society's programs to support the families and loved ones of our patients. 

The cherry on this double chocolate, brownie sunday with whipped cream and jimmies??  While the fundraising for this event wasn't  technically a competition, please rest assured that with your support...I won!  Dooce would say that I am the Valedictorian of our teams fundraising attempts: WINNING!

So while I think I've managed to contact everyone to say thank you, I just want to say it one more time from the very bottom of my heart, thank you SO much for your support and kindness.

Cogle Lab and BMTU Clinical Research Team

November 17, 2011



Veterans Day 11/11/11

Veterans Day is celebrated on November 11th to symbolically tie it to the Armistice that ended World War One, which was signed by Germany in 1918 on the 11th day of the 11th month at 11 AM. 

So this year on the 11th day of the 11th month of the year 2011, Laura, Leslie, Baby Olivia and I "ran" a 5K to support the Fisher House in Gainesville. The Fisher House provides support for the families of wounded or ill veterans by giving them a place to stay during their loved ones hospitalization. Our veterans give so much of themselves to our country, it's nice to support an organization that helps our country to give back, even just a little bit.

November 11, 2011

Please also note that my race number adds up to 11.  This is poetry in action people.

Breast Cancer Awareness Month

October 12, 2011

October is Breast Cancer Awareness Month and I have to say, whoever engineered this campaign deserves a raise, a big one. Half of the NFL has pinked itself out, proving that even within this bastion of testosterone, these athletes love and support their mothers, aunts, grandma's, sisters, wives and friends and unite in the face of a terrible disease.  Real men do wear pink...and apparently so do motorcycle cops. :)

Reblog this:

I am insanely lucky in that I don't need any of the following resources.

Maybe you do though?  And if you don't , maybe you know someone who does?  Or maybe some day down the road when you'll think "oh - I wish I knew where to look for help," and you'll remember that I once posed a blog with all sorts of resources on it and come back to use it.

Just sending this out into my blogosphere of 10 strong and hope that it'll get passed along from person to person and maybe help someone.  Re-blog, re-post and pass along:

Depression Hotline: 1-630-482-9696

Suicide Hotline: 1-800-784-8433

LifeLine: 1-800-273-8255

Trevor Project: 1-866-488-7386

Sexuality Support: 1-800-246-7743

Eating Disorders Hotline: 1-847-831-3438

Rape and Sexual Assault: 1-800-656-4673

Grief Support: 1-650-321-5272

Runaway: 1-800-843-5200, 1-800-843-5678, 1-800-621-4000

Exhale: After Abortion Hotline/Pro-Voice: 1-866-4394253 

(reblogged from Blurbomat) 

Bert and Ernie got married...but WHERE HAS ALL THE COFFEE GONE?!

There are few things in this world that I love more than my morning coffee. Mornings are generally pretty quiet affairs in my world and since my coworker Diane is usually the first person I talk to in the mornings and that's a good 45 minutes after I roll out of bed, waiting until I get to work for my 8 oz of caffeinated sanity usually isn't an issue. 

Last Thursday was the exception to this rule.

Last Thursday morning was busier than usual what with leaving town that night an all.  Leaving town means goodbyes to my boys, packing and getting me and my baggage out the door.  I lay there staring at the ceiling, thinking about my "to dos" before leaving the house when... plotseling de telefoon rang!  Just once and then it stopped.  Someone must have glanced at the clock, realized that it was 645 and thought better of calling...smart cookie. The coffee has not been had yet, I cannot be fielding phone calls.

Two minutes later the phone rang again... and again...and again.  Smart cookie is maybe not so smart.  Generally early morning phone calls simply go unanswered (one of the luxuries of being young and relatively unattached) but it was my sister and because she is my sister and we were traveling together later in the day, I picked up the phone.  I still not really all that clear on what the conversation was about because I was half asleep and she was all kinds of worked up over the mail service but I do know that my responses were clearly not satisfying to her as the conversation came to an abrupt conclusion and was then followed up by several clarifying text messages.

All this before I set foot out of bed and way before the coffee could find its way to defogging my brain. 

So by the time I loaded up the car, squdged the kitties, kissed Wes goodbye and made my way to work, I'd already had way more than the usual amount of person to person interaction in my day.  Thrown a'kilter by this atypically social morning, I thought about stopping for a latte but decided, nah...I'll save the four bucks and just make myself a cup of joe at the office.

 Are you getting a sense of foreboding? Can you hear the ominous music playing? Are you thinking, "No Anna No!  Stop for the latte!" If so, you can go ahead and classify yourself as a smarter cookie than I am.  

A little bit later than usual, I trot up to the office and as I say my good mornings, I am informed by a seriously indignant coworker that Sesame Street is considering letting Bert and Ernie get married.  Married! Apparently expanding the definition of marriage to include puppets is just far to much for the right wings' knickers, which are seriously, and very uncomfortably, twisty.   It's a fun fact to be sure but then... BEFORE THE COFFEE HAS BEEN HAD... a debate gets going on about whether it's appropriate for two "male" Muppet's to get married on a kids show.  And I know where this is going, it's going where almost all conversations go in my office, it's going straight towards politics. 

Need I remind you at this point that THERE STILL HASN'T BEEN ANY COFFEE!

 And so as I stand there, utterly bereft by my lack of coffee and the plethora of opinion flying around me the debate begins and soon I'm cringing and feeling the need to stand up and throw in my two cents (because seriously, when I have I ever been known to not have an opinion) but I'm held back by the single and powerful facts that it's not even 8 am and I STILL HAVEN'T HAD MY DAMN COFFEE YET.  There is no debating pre-coffee. 

As I sat at my desk, in torturous silence, waiting for my nice cuppa sanity to brew, I asked my self "who are these people who have such social skills first thing in the morning?  What's wrong with these coworkers of mine who can muster not only an indignant opinion but then rile up and debate before 8 AM?"


It struck me like lightening, like a light switch being turned on...these are people with children.  Children who rise and shine with the sun, full of spit and vigor and who awaken their parents with the expectation of being fed, dressed, talked to and loved.  These people live in a different universe than I and have clearly already had their coffee.

Comforted by this realization that means I am not inept, just childless and thus minutely handicapped by my expectations of quiet morning, I sipped my large cup of coffee and slipped my headphones on.  Bert and Ernie's love nest is none of my never mind...I don't say a world.

Snowed in? HA!

Sometime around June-ish, it's going to be hot, humid, muggy and buggy down here in good ole swampy Florida. I know that I will be suffering hugely in a few months but I somehow feel compelled to further bastardize my weather karma by gloating about the insanely beautiful weekend I had last week while those up north were preparing to be buried in snow and sleet.

There was a Club Fun gathering this past weekend for what is becoming a traditional Susan G. Komen 5K.  Ashleigh and I ran it last year while El Senior was in class on his way to becoming El Senior, MBA. This year he ran also (albiet much faster than we) and several of Asheligh's fellow ISR instructors and friends joined us for the walk. 

Saturday marked the second time in our friendship that Matt drove questionably fast to get me somewhere that I need to be.  Thankfully this time did not involve a jellyfish OR a shot in the "heep," but rather the need to get to the starting line so that Ashleigh and I could rock out a solid 12 minute mile pace.  For this I nominate him to become the El Presidente of Club Fun. 

After the race / walk we came to my favorite part of the 5K tradition: lunch and cupcakes. The lunch portion is just part of a normal day, though on this day the lunch was spectacular and satisfying to the max at CG Burgers.

The only thing better than a cheeseburger and a beer is a cheeseburger and a beer that have been earned.  I now dream of CG Burgers and sadly live far far away from them. 

So while lunch is a fairly commonplace occurrence, the cupcakes...now those are just plain celebratory.  Last year we stumbled upon the cupcake store -- this year we sought it out and it was just as tasty as I remembered. 

Yum dark chocolate, chocolate cupcake with cream cheese frosting, yummmmmmmm.

Day two in SoFla was equally as beautiful, even more so since we didn't have to get up at 530 AM to go running.  The sun out shining and we made our way to a lovely little restaurant on the inter coastal where we lounged in the sun while we waited for a table.

 Please note the fruity drink in the corner of the picture above because that fruity, delicious and refreshing drink turned out to be nuclear strength.  Don't let the pinky-orange color fool you, it's tropical Long Island Iced Tea and once you are 2/3 of the way through it you will be drunk and slurring charmingly about your life plans.

It was a lovely weekend that was topped off by a visit to Monica and Ozzie in Tampa where, true to form, I was fed and pampered beyond all reason. There was sushi, tuna tartar and IKEA.  Sigh...it's a rough life. :)

The Disapprearance of the Glitter

 When I was a kid, I quite honestly LIVED for sleepovers, sleeping bags and a tiny tv in the damp, half-finished basement of someone else house and we were seriously happy. Every weekend was an exercise in convincing my mom that I could sleep over at a friends house and not get sick or be cranky the next day.  One of the worst parts about middle school and high school was that asking for a sleepover was far more mine-fieldy than it had been in elementary school.  Something about puberty made asking someone of the same gender to spend the night was far more loaded of a question.  First was the fear of rejection - what if they don't want to come?  Or even worse, what if they DO come and then tell everyone else at school how disappointing or uncool the whole thing was?  Then people started having sex.  Granted this was way before I was even thinking about it (later life conversations have indicated that I was a bit of a late bloomer if not outright back-asswards in high school, I however prefer to think of it as a lack of boyfriend options especially after eliminating boys whom my friends had already dated) and the chances of being accused of being a lesbian if you asked the wrong person too eagerly, were pretty good.  It occurs to me that being called a lesbian shouldn't have carried the unspeakable horror that it did.  I'll admit that I didn't want to be called this, in part because I'm not in fact a lesbian but far more than that was the disdain and disgust with which the accusation was thrown. 

A while back I came across this website called  WriteYourPrincipal.com.  This movement encourages people to write to the current principals of their former high schools and ask one question: what is your school doing to stop bullying and support GLBTQ (gay, lesbian, bisexual, transgendered and queer) students and their allies?  It's all very warm and fuzzy to think that our society is open minded and tolerant but the rash of teen suicides because of bullying indicates that our children aren't, which to me is a pretty good indication that we as a society aren't either.  Up to this point I've only thought about sending a letter of my own, mostly because I just didn't know what to say. I've never ACTUALLY been discriminated against because of my sexual orientation and while I'm sure some of my friends must have experienced this, I don't remember actually seeing it first hand in high school.  I think I know what to say now, and to hold myself accountable I will post whatever I end up sending here in the near future. 

I digress however and my original question still stands: when did sleepovers lose their lure?  Is is since we moved out on our own and now home isn't necessarily a place that we can't get into nix level shenanigans?  I'm not sure but I do know that the fun of staying up late in someone elses house, sleeping on the floor and on couches and waking up far away from my own shower has lost its glitter and lure. A while back a friend of mine had a truly heart wrenching turn of life and needed some overnight company.  While I am glad that I was there, she truly needed other hearts beating around her that night, I didn't sleep and I ended up sick for over a week.  It was misery and I have to wonder, is this the first sign that my soul aging?  Or is it just that I've become that darn attached to my own bed?

Mr. Beistle

I went to a Celebration of Life the other day for one of my teachers from high school: Mike Beistle, from here on out referred to as "Mr. Beistle" because that is how I knew him. Even though I hadn't seen Mr. Beistle in over a decade I went because think that funerals are important, in part because it is a kindness to the family but also because I think genuine remembrance is the most sincere and poignant gift a person can give.

Even before I went tonight I knew that more than remembering on my own, I'd be hearing about other people's memories.  Mr. Beistle was my teacher for one year and my memories are literally nothing in comparison to those of his friends.  I was glad that I went because while I will always remember Mr. Beistle with a smile, he wasn't necessarily the teacher that touched my life and changed it forever.  Sitting in the Hippedrome on Sunday I got to hear from the students whose lives both in high school and after were significantly warmer and safer because of him, students who chose to be involved in theater, art and performance rather than pursue more traditional paths because he told them that they could and that it really was okay.  We went to a private college prep school and while it was filled with amazing teachers and people of all kinds, Mr. Beistle was unique in that he encouraged student to following their passions and dreams even when doing so would take them down different, perhaps less affluent paths.

One of the best things that was said of Mr. Beistle at the celebration was said by his best friend: "He could always make me laugh.  In part because he was pretty quick but also because, well, Mike was just a really strange human being."  I hope that someone loves me enough to say that of me at my own funeral.

Who needs math when you can just dance in a cage on the weekends?

I had a not so great Math teacher in 8th grade named Ms. Uman.  She was a Go-Go dancer on the weekends and did a MEAN lawnmower dance.  Excellent role model this chick, EXCELLENT. (Sorry Ms. Uman, but its true.) In retrospect I know she was a not so great teacher because she was ALWAYS sitting down on the stool in the front of the room.  I have 12K in debt and a Masters degree in Education that taught me sitting teachers are generally lazy teachers.  At the time, I knew it because at the end of the semester she told that class we'd only covered about 1/2 the curriculum but not to worry, we could always just repeat it next year.  Awesome.

There was a kid in Ms. Uman's 5th period class that only had one shirt.  He was quiet and he sat in the back of the classroom.  I have to admit that I never noticed him until someone started talking about the fact that he never changed his shirt. The giggling started each day when he walked in wearing the same waaay too large shirt.  The giggles turned to talking which turned to gossip and the gossip in turn became a class joke. 

This is what I think of when I hear complaining about the uniforms imposed by the Alachua County School Board this year.

Limiting students to plain polo shirts, khakis and jeans may (and I say may with as much skepticism as can be crammed into a three letter word) repress student individuality and freedom of expression.  These quasi-uniforms may not be strict enough to bridge the gap between the haves and have nots.  It will however make the Joe's less noticeable.

That Darn Constitution

My friend Kate has a blog. She writes this blog, not because she likes to bitch and moan like I do, but because she wanted to hold herself accountable for the 26 things she planned to do during her 26th year. I think this is fantastic and with my 27th birthday just around the corner I started thinking what would be on my list of 27 things would if I made such a list. In true nerd fashion, re-learning the Constitution and its Amendments is actually on this list. I attribute this need to remember my Government ABC’s to a.) the current contentious political climate, b.) personal shame in being certified by the state of Florida to teach history yet unable to remember any of the Amendments past the nineteenth and c.) watching too many re-runs of The West Wing.


It never fails that the minute I focus on something I end up seeing it everywhere. I read The Immortal Life of Henrietta Lacks and suddenly I started seeing disinterest in or ignorance of the importance of informed consent everywhere. Now, as bizarre as it sounds to be voluntarily studying up on one’s constitutionally given rights, now that I’ve begun I see its pertinence everywhere. Mostly, I’m seeing it in the rhetoric surrounding the building of mosques, both near where the World Trade Center Towers once stood and elsewhere across the country.

I get that the debate surrounding the so called “World Trade Center Mosque” is being waged on two separate levels, emotional and legal. I understand that for thousands of New Yorkers, Ground Zero holds memories of terror, sorrow and loss that I just cannot imagine. To that end it is difficult to classify all those who oppose the building of this mosque under the auspice of being closed minded bigots and xenophobes. Yet it seems that it is not the Lower Manhattan community that is leading the mob against the so-called “Ground Zero Mosque.” New York Mayor Michael Bloomberg has come out adamantly in support of the mosque. Representative Jerrold Nadler, the Congressman who represents the district housing both Ground Zero and the future site of Cordoba House also supports its construction, calling those who single out Muslim-Americans because of their faith “shameful and divisive.” The New York City Landmarks Preservation Committee had the opportunity to block the building by designating the site one of historical significance yet chose (unanimously) not to do so. So if the elected officials (who theoretically represent the people therein) and community boards governing this area are not opposed, who exactly is lighting this fire?

Arguments for the symbolism of the area and the need for sensitivity to the situation are not unreasonable nor have they fallen on deaf ears. Any and all actions and words of the organizers of Cordoba House (and many Muslim-Americans for that matter) to show compassion, unity and solidarity have been dashed as “not enough.” It seems that nothing short of renouncing the Muslim faith would be enough for this crowd.

It seems to me that the debate of whether they should build is one of emotion, while the question of whether they may is based in law. A law that clearly, adamantly and without question mandates that you cannot discriminate based upon religion. In other words you can’t prohibit someone from building a house of worship on public property that has been legally procured. I’ve heard the argument of “anywhere but here” but we can’t pick and choose where we defend religious freedom and where we don’t. In my mind if we do we will become exactly what Al Qaeda believes us to be: pompous, hypocritical and immoral.

Beyond the grey fog that on second thought is simply obfuscating a rather black and white issue, I am struck by the shocking amount of misinformation that is available under the auspices of “news.” After hearing that President Obama is a Fascist AND a Socialist nothing should suprise me, but darned if it do.  I can’t help but think though that when we talk about issues as important as this we should tell the truth, if for no other reason than its hard enough even without having to dispel rumors and correct outright lies. I’ve read that this mosque will be built “on the site” where the Twin Towers once stood and that is not the truth. The future site of the Cordoba House is within 2 city blocks of the World Trade Center but it is also within one block of a Jewish community center and within 3 blocks of a Catholic church. Should we ask these other religious institutions to close their doors because of their proximity to the where the Towers once stood? More disturbingly even than that, which I attribute to the fear-mongering dramatic sensibility of the media, is the description of Islam as a “political movement that’s taking over America.” Accusations like this are terrifying to me because there are people who believe them.

I am not saying that the feelings of survivors and victims of these terrorist attacks should be disregarded, kindness is never wasted. What I’m saying that the 1st Amendment to the United States Constitution applies just as well below 14th Street as it does above. I’m saying that the Terrorists who flew those planes in to the Twin Towers killed those in them indiscriminately, Christian, Muslim, Jewish and Atheist alike. I’m repeating Michael Bloomberg and remembering that the thousands of first responders held out their hands to help and never once asked who the victims prayed to. We can’t fight hatred with discrimination and an inability to differentiate between extremism and faith. This is a test of our mettle and we really need to get this right.

See? This is what happens when one reads the Constitution. You start to take what it says seriously.

Wondering...

Why do people insist on using the terms 'virtue' and 'virginity' interchangeably. 

Just in case you were wondering:

Virgin (n.) - a person who has never had sex
Virtue (n.) - the quality of doing what is right and avoiding what is wrong

I am not okay with people trying to legislate and legalize morals but I am really not okay with people inflicting their morals on the English language. 

They are NOT synonyms!!

lighting a candle

I went to a funeral yesterday for a patient. I went to a funeral yesterday for a friend that I barely got the chance to know. Four months ago this person walked into my life at work looking for help and I was blessed to be a, however small, participant in providing that help in the form of an experimental treatment.
I am not the chemist who helped to develop the drug and I'm not the doctor who saw promise in this drug and worked to bring it to his patients. I am not the physician assistant who provided the daily, weekly and monthly practical health support that kept him going for as long as he did. I am not the nurse who drew his blood, watched his vitals and tracked his improvements. I am the person with the blessedly ambiguous role of Research Coordinator.

I have come to realize that with ambiguity comes freedom, the freedom to do as little or as much as you care to do. Thanks to an amazing trainer, coworker and friend I knew how to do the most that I was capable of. I am the person who got to know him and his family. I am the person who got to find the answers to his questions and the person with the time to explain the small but important things. I am the person who got to listen when things went wrong, find solutions and ease the burden of the logistics inherent in receiving health care. I am the person who got to celebrate when his labs began to normalize. I am the person who got the "I'm feeling so much better!" emails and phone calls and I am the person who, however unwisely felt the warmth of his excitement. I suppose it's only fitting that I am also one to attend his funeral and mourn with his family.

There are nurses on the unit who strive to attend the funeral of every patient that they care for, I am not one of those people. I can't be one of these people, it would destroy me and make me useless for future patients. This is only the second time that I have gone to the funeral of a patient. You might think that death in a cancer hospital would not catch you off guard but for me his did. I only met him and his partner 4 months ago, but really, how long does it take to know that you've met someone exceptional? How long does it take to acknowledge that this is someone that you want to know? I expected that I'd have months, years even to hopefully watch him improve and get to know him. This past Wednesday I needed to say goodbye and I needed to hug his partner because when there are no words, all I know to do is to hug.

This man (who I cannot name) had an incredible network of family and friends all of who could explain and celebrate who he was far better than I could ever hope to and so I will stick to only the things that I know for sure.

He had an amazing smile that lit up his entire face, it was the first thing about him that you noticed: beautiful teeth and an incredible smile. If it was his smile that caught your attention though it was his eyes that drew you in and held you. They say that eyes are the window to the soul and I believe it because through his eyes you saw the gentle, irreverent joy that seems to have characterized his life. He was a warm soul who could find the silver lining in just about everything....well everything just short of ascites and paracentesis. :) He was 1/2 of a relationship that was truly what we all dream of having for ourselves, one full of laughter, love and respect. A relationship that made me re-evaluate my own standards for love, a relationship that made me know that I could never settle because if something like that is out there for me I'd be doing myself an injustice by selling short.

I am disappointed and angry that I did not get the opportunity to know him better. My heart aches to think of his partner hurting as he I know he is. I wish for him to find comfort and peace but I know that only time will bring him these gifts. So in the place of gifts that are beyond my capacity to give I offer up to the universe only my love and my remembrance for the man who can only be named here as 001.

As cliche as it may seem, I am distressingly aware today to of the transitory nature of life. I sat on my couch this evening after work and I was afraid. Afraid of the contentment that I feel each morning when I wake up next to Wes, and each evening when I come home to him. I feel guilty for being so happy in the moment when someone equally deserving of happiness can barely breathe for sorrow right now. That could be me tomorrow. I have never been so afraid.

I lit a candle the night that my friend died to help light his way to wherever we go from here. I have faith that there is a somewhere else and that when he got there, Charlie and Sharkie were waiting to greet him. I will light another one tonight in remembrance and gratitude.

Thank you for being a part of my life.