Wednesday, May 2, 2012


May Day.

Yes Ter Day.  Per Se.

And why is MayDay a distress call?  I already did the wiki detour.  Not important.  Just curious.  It's French, per se.

This is going to be a rambling mess of swirling thoughts.  Yesterday, I was invited to a presentation given by The Ohio State University Comprehensive Cancer Center: The James.  They are an NCCN Member Cancer Center.  They are also an NCI designated Comprehensive  Cancer Center.  Of the 41 NCI centers, they are one of only seven centers funded by the NCI to conduct phase I and phase II clinical trials.

Sidebar:  The NCCN is comprised of 21 major cancer centers throughout the US.  They write and continually update the guidelines for the treatment of any and all cancers.  The guidelines are a series of flowcharts that are available for anyone to read.  Why do I know this?  I have a binder filled with the "doctor version" of the breast cancer treatment guidelines as they existed in 2006 when I was diagnosed.  When my friend's 20 something year old son was diagnosed with a germ cell testicular cancer, he was being treated at the local oncologist's office.  Oncologist happened to be a friend but the night before what I calculated should have been a chemo treatment (if said friend oncologist was following the recommended guidelines), I sent my girlfriend a text message asking if the following day was going to be "Poison son with toxin A and toxin B"   ......   I recall the immediate reply:  "How do you know that and HOW the hell do you know the names of the drugs??"  I simply forwarded her the PDF that I downloaded from the NCCN site.  And I was confident in the kid's doctor.

Second sidebar:  Phase I and phase II clinical trials.... there is a semi written post about the importance of clinical trials which I will finish writing.  The post had more to do with explaining the difference between a research study and a drug trial to coerce more women to enroll in the Army of Women database.  Then I realized that clinical trials SAVE LIVES and it required a bit more digging to provide good links to easy to navigate sites.  Which explains why THAT post remains in the "semi-written" state.

There are many people to thank for that invitation and there are many things to share but for now, the only thing I want to mention is that I already KNEW OSU was On The Edge.  Stick with me here for a few moments.  In one of my very first posts, I mentioned my very dearest friend.  She's been by my side, literally, from the DAY the first radiologist told me he would prepare my films so I could have them reviewed by a breast surgeon.  I remember him holding my hand ever so gently.  I remember his voice, calm and steady.  I remember him looking into my eyes hoping to reassure me. "AnneMarie, I am sure they are going to want to remove those things to make sure they aren't cancer."  I don't remember leaving his office (which I apparently did without incident).

I do remember being in my car in the parking lot in hysterics on the phone with my husband, "You don't understand.  THEY KNOW what they are looking at.  THIS IS NOT GOOD."  I don't remember the ten minute drive home until I was about thirty seconds from my driveway.  I remember he called me to make sure I got home safely (I was about ninety seconds from home when my cell phone rang) and I remember telling him, "No, I only called Linda."  I'm guessing he must have asked if I called anyone (like my mom, which I didn't, until weeks later and only after much coercion).  And I remember being at my kitchen table for no more than ten minutes when my front door flew open.  It was Linda.  Sashaying through my hallway and into the kitchen in her very best Jackie O strut, announcing as she approached, "Don't you DARE think you are stealing my thunder.  I'm the cancer patient, NOT YOU."

The scar on Linda's neck was still visible.  It went from one ear to the other.  Her thyroid was removed two months prior. Medullary thyroid cancer.  As it happened, MTC was mentioned yesterday at the presentation but this is relevant to this post because I already knew they were ON THE EDGE at The Ohio State CCC, The James.  When Linda was diagnosed with this extremely rare cancer for which there was no option besides surgery, I refused to accept the words of her doctor.  "We will monitor your calcitonin levels.  When they go up, we will scan you.  We will locate where the cancer is growing and Dr. Excellent Surgeon will remove the cancer.  When Dr. ES tells me he can't cut anymore, we will throw you into a clinical trial."

Linda is a patient at MSK and I'm 1000% certain that is not the way the doctor said that to us (and yes, I was at her side for that visit and many others), but that's the way I heard it.  And I began to research.  And Linda and I were making a field trip to Ohio.  There was ONE doctor in the entire country (that I was able to find) who was doing some sort of a clinical trial on medullary thyroid cancer.  The print-out is probably still in a file in my office.  I knew, in March of 2006, long before I became so intimate with cancer, the good folks at OSUCCC were OUR Lady Gaga On The Edge (LG was still Stephanie and she was still in school and unknown so she was On The Edge, too).  NO Matter.

Yesterday, their presentation reminded me of what I've known for six years.  If I was impressed in 2006 reading about one doctor's research, I was that much MORE IMPRESSED yesterday to see how they work in collaboration across many disciplines to advance the research toward the goal of preventing cancer.  No one is working in a vacuum.  There was a cohesiveness, an effortless transition from one aspect to the next, a sense of teamwork and one shared common goal.  Fix this mess and attack it from all sides.  The details of the presentation will have to follow in another post but I left the luncheon with a renewed sense of hope.  We CAN do this.  They will lead by example, an example I hope others will soon follow.

That was far more than I expected to say, but I suppose OSUCCC has held a very special place in my heart for all of these years.  The memories began to flood in when I saw the words Medullary Thyroid Cancer on the screen.  Oddly enough, MTC was mentioned during the genetic presentation which is only odd because we had a conversation on Monday evening on twitter about hereditary breast and ovarian cancers and I did take a bit of exception with some of the statements that were being used during our weekly chat.  Words like "true negative" have no place in a conversation about genetics when the science is still in its infancy so I was very interested to hear what they had to say about the genome.  Again... off topic... but I'm not really on a topic.... 

I'm supposed to be rambling... so here goes with the rambles.....

It was pouring as I was driving into the city.  Rather than listen to music, I turned on the local radio news station.  The purpose of the radio was to monitor the traffic because one can never have too much information when driving on a rainy day where one needs to arrive somewhere by a specified time.  The car was monitoring traffic via the nav, my iPhone was monitoring traffic via the sucky AT&T cell network and the radio was monitoring the traffic via the air waves to my ears. In the process, via that radio,  I learned a whole bunch of other "stuff."

It was likely, thanks to May Day May Day that #Occupy Wall Street would be causing traffic disruptions in and around the city because that's just what protesters should be doing to make their point.  Piss off everyone who is trying to get to and fro in an already insanely crowded area, on a rainy day.  I'm pretty sure those cabbies are NOT in the 1% so why?  I get it. You need to make a point.  But JEEEZZZZ, you guys were pissing off the 99.  Just sayin'

Mitt Romney was expected to be in town at some point.  That's not a political statement.  That's just another traffic inconvenience.  It's not an Obama inconvenience with street closures and frozen zones but still, an issue.  A traffic issue. On a rainy day.  With protesters in the mix.  And Mitt. 

Then, I got the feel good story as I was headed for Columbus Circle to the venue for the luncheon.  I drive distracted so I tend to not pay much attention to the radio unless it's pertinent to the purpose.  The rain, the traffic, Occupy, Mitt and I hear something about best restaurants and I only heard, "two of them are in NYC: blah blah blah and Per Se."  I can't rewind the radio like I can back up the TV so I had to wait until I got home to google the story.  Per Se is the restaurant where the presentation and the luncheon was held.  It's not even fair to call it a restaurant.  It's an "experience."  And, it's on the list of The 50 Best Restaurants IN THE WORLD.  It's number six.  In the world.  And I was an invited guest.  Actually, in looking at the list, it's the first restaurant on the list from the USA.

And to close out the day, I was thinking about this weekend in Washington DC.  The Avon Walk ends on Sunday.  The NBCC ends on Tuesday.  There are going to be tons of women with breast cancer  passing through Reagan National Airport in a 48 hour period.  I was thinking someone should alert the TSA.  Lighten up with the pat downs in the body scanners.  Really. We should get some sort of designated area or something..... and Bam!  Fat chance.  There goes that breaking news music.....  "Wait!  What???"      "heightened security...."       "no credible threats but....."

Well, ladies, not only can we expect pat downs, I'm thinking they may be doing "scar checks" to make sure we are all healed.  As the story goes, we are now on an alert for "terrorists with bombs surgically implanted inside their bodies."

Geez, ya don't suppose I planted that thought in anyone's head......... 

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