The Nurse Boom and Banana Farewell Tour

Nurse Boom and I went down to Orlando about a month ago for a weekend at the Annual ACRP (Association for Clinical Research Professionals) to get our learn on.  While not intentionally planned as such, it was a well-timed farewell hoo-rah as we've been conference going buddies for almost five years now.  Much like I already miss seeing her face every morning, I will miss the funsies of going to conferences together. 

Okay, so it's not a picture from the conference but still: Boom and Banana!



Before I get to telling you all about the impressive swag that we acquired there (and it's worth waiting for, I promise), we went to a keynote speech by Charles Sabine, a news reporter turned Huntington's Disease advocate.  His speech was, for lack of a better word, outstanding and I’ve been thinking about it ever since.  Mr. Sabine's family has been ravaged by Huntington's Disease, a hereditary disease that causes nerve cells within the brain to degenerate, resulting in debilitating physical deterioration and dementia.   It's a terrible disease for which we currently have no preventative or curative intervention.  Mr. Sabine has watched his father and uncle deteriorate and die from it, he is currently watching his brother deteriorate rapidly and he himself will someday soon begin to experience its symptoms and inexorable decline.  It is an area in which clinical research is much needed, hence why he was in Orlando talking to us.

If I related to you all of the things that he said (which are continuing to resonate even now), we would be here all day.  I'll spare you and just throw out there that which struck me as the most powerful:  the complete uselessness of defining a disease as incurable.  (The following is essentially a paraphrase of his speech this morning, a thing that I think he might be okay with if only because it might make 18 more people in the world a little bit more aware of this terrible disease.) Most illnesses and conditions that affect us are incurable: the common cold, influenza, depression, chronic cancers, heartbreak.  We cannot cure these things but rather, we’ve learned to ameliorate their effects, to minimize the lasting impact that they have on our lives.  Beginning a person’s experience with this disease by telling them that it is incurable does them a great disservice, it removes their hope.  Hope is what pulls us through the darkness, it what makes us look for something better and it’s what all research is built upon.

It's just a thought.  A thought that makes me proud of the very small part I got to play in heme-malignancies research over the past five years.  Thanks Universe. 

Now on to the swag!



ACRP swag 2013

That's a grand total of four bags, two t-shirts, three stuffed animals, two coffee mugs, two water bottles, a calculator, six pads of post-its, a medical dictionary, a calculator, three mini bottles of cetaphil body lotion, four pen sized hand sanitizer dispensers, three car iPhone charger, a desk iPhone holder, luggage handle, a ruler, a snap bracelet and five squeezy "work missile" balls.  Impressive huh? 

We also did some old-school Tebowing;



and even made some research-y friends:

 

So far as farewell tours go...it was pretty darn awesome.  I love you Nurse Boom! 



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

 

 





Unicorn

I met a unicorn yesterday. 

Sadly it was not a real, cotton-candy eating, skittle pooping unicorn but a metaphorical unicorn.  Disappointed?  Tell me about it. 

Abandoned by the other members of the Front Office for their vacations, I was feeling a tad bit bereft and decided to attend the noon Influenza-Gonna-Kill-Us-All lecture all by my onesies.  It's a small understatement to say that I've been looking forward to this lecture for a long time. Not long after I first started at this job the director of our unit gave a lecture on influenza, now it may sound bizarre and unbelievably geeky but this talk rocked my world.  Maybe it's because it was the first work lecture that I was able to comprehend, maybe it was because he mixed history with health care and then tied it back into what we do.  I don't know but I was so enthralled by this lecture that I went home and bought a (okay several) books on the Spanish influenza pandemic of 1918. (My nerdiness truly knows no bounds.)  So it's fair to say that I've been looking forward to a reprisal of this conference for approximately four and a half years now and I saw no reason to miss it just because I had no posse. I left the conference and hour later still feeling bereft and even a tad bit disgruntled. What's the fun of a sensational virology lecture on pandemics when you're alone?  That's right, it's no fun all.

Being in the neighborhood, I decided to stop by the Cogle Lab.  I've been "learning" french via a podcast and was hoping that I could somehow convince Raphael (the french-speaking MD/PhD student in the Cogle lab) to say "Je suis prêt" and "sœur" without having to tell him why.  My podcast is broadcast by BBC Scotland and I've been minorly concerned that I may be developing a very strange American-Scotch-French accent.  I did not succeed in this covert endeavor but I did meet...the Unicorn.

It seems contrary to what you might think but people working with cancer seem to be an atypically happy group of people.  Wicked smart with dangerous senses of humor, my coworkers are complete lunatics but by in large quite happy.  Standing around talking about nothing in particular we came to the topic of GRE's and other standardized testing when The Unicorn walked into the room.  Never have I ever before met people whose math scores are what saved their GRE scores. Math scores, not verbal boosting the total score. I say again: math scores that ecclipse verbal scores? I seriously thought that such things were the stuff of legends, stories told to make liberal arts and science people like myself feel bad about our less than robust math scores.  Never in a million years I didn't think I'd ever meet such people in person and I admit that the poetry club nerd in me just can't help but rejoice in that I get to call them friends. 

The kind souls that they are they gave me a moment to gather myself as The Unicorn trotted in circles around me...and then we broke out the griddle and made some grilled cheese sandwiches.  True story. :)

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.

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



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. :)

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 Triumph of Birthday Day

Birthday Month has triumphed! 

Despite the poo-pooing of many, and the negative actions of a few, the funsies, contentment and smiles promised by Birthday Month was delivered in spades!

Case in point #1: The Monster, Mr. Murry.

All of my fears about adding a kitten to our one cat house and becoming a Cat Lady who smells vaguely like ammonia, have proven to be unfounded. I love my Monster Murry. I also worried that Joe Lewis might not take to kindly to this orange intruder, but clearly these concerns were unbiased as well. 

Score one for Birthday Month.

Score two for Birthday Month you ask?  Birthday Day. 

Despite talking to my bestie (hi Ashleigh!) all the way to work and partaking in my favorite of cakes (thanks for the rum cake Nurse Leslie!) I found myself in in an evening funk.  I know right, there's just no excuse for being funky on one's birthday.  So I drank a glass of wine and watched a rerun of Gilmore Girls.  There was still some funk.  So I drank another glass of wine in the bathtub with the newest US Magazine.  Funk begone, enter drinks and dinner with Wes (alias: Wonderful Boyfriend) and a Birthday-Friend Kristin.

                                         

Birthday Month continued on the night of the 21st, officially known as Asheligh's Birthday.  One limo, lots of great friends, some sushi and a few glasses of wine and you've got a solid, double birthday party. 

                                             

                                  

Meredith came, I got to wear a sparkly shirt, nobody once made fun of me for having a few chardonnays (what of it!) and I got to spend my evening with Wes and friends who I love.  If that isn't a stellar birthday celebration then I don't know what is. 

                                   

Birthday Month witnessed the raising of over fifteen thousand dollars for Breast Cancer Research.  My mom (Hi Mom!), Erica, Javariah along with over 1000 others walked 60 miles around Minneapolis St. Paul over the course of 3 days to raise money and awareness for Breast Cancer.  They rock my face off.  That is all.

                                          

And then there were....wait for it....wait for it...MATCHING SPICE JARS!!!  My ever fabulous sister gifted me a fantastical set of beautiful, sleek and shiny spice jars.  With labels!!! 

                                    

We wrapped it all up last night with Fight Night. I myself don't watch the fights but there's just nothing quite like homoerotic MMA fighting, beer, sparring and waffle fries to ring out Birthday Month with a bang.

                                            

                                         

                                            

                                      

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.

An Amazing Day

2010 Susan G. Komen South Florida Race for the Cure

January 30, 2010

5K

Thank you SO SO SO much to everyone who donated to help me reach my goal of $150 towards breast cancer research. It was only a 5K run but it was done in honor of the women who have fought and continue fight this devestating disease. Over 20,000 people came together yesterday to give their sweat, their time, their money and their voices in the search for a cure . It was an amazing experience and an event that I am SO PROUD to have been a part of.

Sharkie

They don’t really need to tell you when you start this job that you ought not to get too close to your patients. Even if you’re not familiar with the survival statistics, common sense says “build a wall.” We build these walls out of self preservation, if we were laid low at the death of each patient we’d never get up off the floor. Be this as it may, sometimes when you aren’t looking a patient becomes a friend. This has happened to me twice in the almost two and a half years that I’ve worked here. I lost my friend Charlie almost two years ago, and I lost my friend Sharkie barely two days ago. We miss you already.

Sharkie was one of the first patients that I ever saw receive a bone marrow biopsy and it was awful. He was so sick in so many ways, if I could have left the room I would have but I was stuck in a corner and had to stay. I remember one of our physicians predicting that if he survived the week then he surely wouldn’t survive his first round of chemotherapy. Two weeks later he was feeling and looking better than anyone with newly diagnosed leukemia and receiving cytotoxic drugs has any right too. He ended up making it more than two years. Then again that was Sharkie: contrary in a rather delightful way. 

Sharkie was a truly gentle soul and that soul shone regardless of the seemingly endless rounds of therapy and the months upon months of illness. Even at his most ill he’d always manage a smile when we came into the room to visit. At times this smile was followed by complaints of the evil night shift nurse or wanting to go home, on better days it was whatever dirty joke he had recently heard. A lot of the time it was just a smile though, one that reached his eyes and told you how truly happy he was to see you. 

 

I didn’t see Sharkie on the day that he died. I saw him two days earlier, sitting up, smiling and with more color in his face then he’d had in months. It may have been selfish on my part but that’s how I want to remember him: sitting up, smiling and being mildly annoyed by concerned and hovering family members. I’ll remember him with his long white hair and permanent tan from fishing. I’ll remember his chicken legs and do-rag reclined in the Infusion Room. I’ll remember how excited he was to see his son’s when they came to town and how much he looked forward to fishing with them.

Leslie brought up the other morning an image that made me smile, one of Charlie, waiting for Sharkie at the boarder of this world and wherever it is that we go from here. Had they known each other in life they would have surely enjoyed each other.

To Sharkie, I hope you have found peace. You are dearly missed.