"Things happen..."

“....when you leave the house.”  - Kelly Corrigan - Glitter and Glue

And they did.  A couple of months ago my phone rang and since it was a Nashville number, I hit answer, then speaker, and waited for the automated Vanderbilt lady to tell me what time to show up again.  But there was silence, then a real voice that said, “hello?”  Uh, well, that was Dr. Sosman asking me to speak at his cancer retreat.  Since I was already such a ding-dong for not saying hello, I said yes.  

Now there were no instructions given except that he said I didn’t have to say anything profound, which I assured would not be an issue.  I floundered over what to say, prayed for guidance, and finally sat down last Friday and wrote the words.  I am a forward thinker, forward mover, and not a looker-backer.  So this looking back business was tough.  Four and a half years of cancer drama in less than 10 minutes with the goal to make a room full of oncologists and scientists believe that their job is absolutely worth it.  Not to mention that I haven’t given a speech since I graduated from high school and before that it was probably kindergarten which my daddy paid me a quarter to do.  

It was a one foot in front of the other kind of two days.  The kind people at Vanderbilt put us up in a nice hotel - the kind with valet parking.  We pulled up in our Ford Fusion with our empty Sonic cups in the console - I got myself an Oreo blast on the way - big living, people.  I get a little confused on those spinny doors so I went the wrong way through it only once and then started to feel a bit insecure about the water I had spilled on my jeans among the suits in the lobby.  And then there was dinner.  

Nice restaurant.  First ones there.  Sign saying “terrace room, third floor.”  We saw one fella standing in the “terrace room” and I headed back to the elevator where I was then cornered by two lovely and smiling ladies who obviously knew who we were.  Big hint - every other person at dinner was either famous in the cancer world or head of something or another at Vanderbilt.  Cue the sore thumbs.  Second big hint - “So, you’re our survivor!” Uh, yeah that’s me.  There were immediate cancer questions, “When were you diagnosed?  What drug did you take? How did you end up at Vandy? and then, YOU HAVE WHAT?”  Either my story was that riveting or they just wanted us to talk so they could hear our Mississippi accents.  Stephen and I sat right next to each other but didn’t see each other for four hours.  I’m not sure what I ate, pretty sure I used the wrong fork, and the conversation spanned from Memphis barbeque to melanoma.  We walked out and headed aimlessly down the street before we could get enough wits about us to call a cab.

At dinner, I learned my target audience for the next day (most people would have already asked these questions) - about 350 oncologists, researchers, and scientists.  I was first, followed by the 4 keynote speakers who have spent their entire careers in cancer research.  These are the people who have uncovered the pathways to how these drugs work and started the clinical trials which I benefitted from.  Dr. Topalian looked at me at dinner and said, “It takes a lot of courage to sign up for something so experimental.”  I said, “When that is your only option, courage is thrown out the window.”

It was at dinner that I began to realize what was happening here.  I was basically their life’s work in human flesh - living, breathing, talking, joking, and showing pictures of my children.  This means something to them.  I am a statistic but this day, it came alive.  I found myself standing on a playing field that was in twisted sort of way, insanely level.  

Thursday morning’s breakfast was a repeat of dinner.  I talked about my kids, I explained the difference in North Mississippi and South Mississippi and had another conversation with Dr. Topalian about how I go into homes and daycares in the inner city for my job.  She asked if I was ever scared.  I said, “not really,” bit my tongue from saying that I was a lot more scared of cancer and instead said, “I just try to find common ground, we’re all people and we’ve all got something.”  She agreed with me.  Meanwhile, Stephen was sipping orange juice and discussing research with Dr. Pardoll.  

So, our original plan was that I would speak at 8:15 or so, wait until the break and then make our exit.  We had already looked at the program and I had plans to swing by H&M and grab me some queso at the SATCO.  I started kind of seeing this plan unravel at breakfast when our new friends were telling us how exciting the information they were presenting would be.  I made it through my speech without vomiting, crying, or bolting.  I looked up and this cast of characters with all the publications, credentials, and whatnot were cheering, high-fiving, and beaming from ear to ear.  When I sat down, Stephen said, “You know we can’t leave, right?”  

“Yes, I’m aware.”

Anyway, it was the next four hours that made me understand where they were and where I was in relation to that trajectory.  I watched four of the top oncologists and researchers in the country, present data on studies - most of them related to melanoma.  There were graphs and charts and words that looked like the alphabet written backwards.  The words “cancer” and “melanoma” were said more times than I’ve ever heard in my life.  (I’m so chicken that I couldn’t say either until about 2012).  And there was survival data.  Survival data from the actual study that I was a part of.  Yes, the results were on a power point slide the joke of the day was which green line was I.  Funny.  What’s even more sobering is that most of it didn’t go past 18 months or above 40 percent.  Well, no wonder, Dr. Wolchok turned around and gave me a thumb’s up, but then said, “Until that number is 100 percent, we won’t stop.” I hugged him for that later. 

Topalian et al.
I confirmed that I might be the top yellow line and my arrow is still pointing to the right - a good sign.

I never cease to be amazed where God shows up.   Smack dab in the middle of some big fancy speaking engagement at the same hospital I walked into four years ago to learn about my cancer.  Apparently, now I’m teaching them.  Over the last four and a half years, He has been priming these doctors to find a cure for this mess.  The cancer that had no options has 3 new approved drugs that can be used.  Dr. Sosman elbowed me and said, “You know this will become the standard of care.”  God has closed doors, opened doors, and strategically planned every dramatic, painful, and heart wrenching incident and decision in my life.  He has moved every chess piece into just the right position.  The statistics were on the screen in front of my face and He said, “I told you so.” 

I asked why, and He said “Wait.”

I told Him enough and He said “Not yet.”

I finally quit asking and said, “Fine. Use me.” 

And, what I know to be true with all my heart is that He’s not done.  

So, what to you do after a day like this?  I’ll be honest.  I put on my ripped up jeans and Converse and headed to the park to watch my son play ball.  I sat with God for an hour in silence and tried to make sense of it.  Then, I determined that it’s not possible.  I gathered what I have and held them tight - my people.  I went to dinner and sat on the patio while I watched my two greatest accomplishments swing and throw a tennis ball at a rather unruly Boston Terrier.  I watched my Daisy become a Brownie and my 56 pound slugger pound a baseball across a field harder than I thought was possible.  I pulled out that research article that Dr. Sosman gave me a few months ago and read through it.  It means way more to me now.

I let my husband be proud of me but he should be more proud of himself.  

Because folks, “Things happen when you leave the house.”  

Dr. Sosman

They called themselves my posse.  Dr. Fong, Dr. Wolchok, Dr. Topalian to my right, Dr. Pardoll to my left.
Look them up if you're bored.

Just because I know you’re wondering what I said, Here it is:

I thought a lot about what to say today and more about what you needed to hear from me.  Obviously, I’m a cancer survivor - stage IV melanoma is what landed me this gig.  

I’m also the wife to my biggest fan on earth - Stephen, a mother of two - a boy and a girl, and a pediatric physical therapist. I spend my days shuffling kids to dance class and baseball practice, packing lunches, teaching babies how to walk, paying bills, making meals, and sometimes the most interesting thing I read all day is about the Mayan civilization from my son’s fourth grade social studies book. 

I represent the girl next door, the mom in Target, the 30 something year old at a country music concert - or rock concert if my husband has anything to do with it.  

I am as stubborn as a cockroach in a puddle of raid, and I do not like for people to tell me what to do - so you can only imagine how well I took on the “sick” role.

I get to live this way because of what you do everyday.  And, if you are wondering - it’s totally worth it.  

I was diagnosed in 2010 with stage 4 melanoma.  I was 33 and had a 2 year old and a 5 year old.  One minute I was making all my own decisions and the next minute my choices were flying out the window like paper money.  I was told where to be and what time to be there and somebody always wanted blood or tissue samples when I got there.  

Dr. Sosman and I met in early 2011 when I walked into his clinic one Wednesday afternoon.  He was the third doctor to tell me I had cancer so I guess I decided to believe him. 

As he talked and wrote drug names on a piece of paper I tried to listen thinking I’d need to look all that up later.   There was one I remember - a clinical trial drug MDX 1106.

or Anti- PD1 - you may have heard of it.

It seemed a little new and sketchy to me since there were only a few people on it.  

I remember very little else about that day other than that scrap piece of paper and the feeling that this is where we should be. 

 I kept listening for the easy but since I never heard it, I went on with a lovely little treatment called IL2.  

26 doses later, I had more tumors than I started with, so I signed a bunch of papers and gave a lot of blood to get this tiny bag of medicine every 2 weeks that would ultimately save my life.   

I had a few detours along the way - a lot more drama than I cared for.  I like to be in control, hate being in the spotlight, and I hate disrupting other people, especially my family. I also happen to live about 3 hours away so it really was inconvenient but worth it.  

About 9 months into this process, I started having back pain and weakness which turned out to be a tumor compressing my spinal cord.  

Uh-oh.  I was in trouble and I knew it when I saw that big slug on the screen.  

This landed me an emergency surgery, a lifetime of MRIs, and resulted in a lot of people really freaking out around me. It was at that point that I decided that this was definitely bad - the kind of bad that when you google the statistics, it doesn’t turn out well - so I also decided that if I woke up from that and I could walk, there was absolutely some reason that I was here.  

That’s probably why about 6 months later, when my wacky white blood cell count turned out to be Chronic Myeloid Leukemia, I just moved on to the next thing.  

Now, next thing included a bone marrow biopsy - without sedation - which I later had a few words to share about and may or may not have ended up at the bar before I went home.  But it also included my friend, Dr. Mohan and a targeted drug that worked.  

It’s been over 2 years since that point.  My bloodwork is probably better than yours.  There are no tumors to measure and this molecular leukemia number we’ve been watching - it’s almost non-existent.  

My blood pressure only goes up when I enter the doors of Vanderbilt Ingram Cancer Center.

The lessons I’ve learned are invaluable.  

I learned to make choices. 

For example, when I found out that the imaging center down the street had a Keurig, I started going there.  I chose to make lemonade out of the pile of lemons I’ve been handed.  

I choose how I show up - I honestly believe that makes a difference so I always wear lipstick and earrings and I have a really good game face.

I learned that I’m the one with cancer and the people who are scheduling me are not.  

I am the one living in the anxiety waiting on test results and what’s convenient for them may not be for me. 

I plan my appointments around my vacation, not my vacation around my appointments.  

If my kids have something at school, I’m there.  

I’m the girl who checks the orders in the lab to make sure they are coded correctly because I’m the one getting the bill, not them.  

When the wrong cancer code is on the test, it won’t get paid for.  Apparently that’s confusing when you have more than one.

I’ve learned that people want to help. If you could have cured cancer with brownies and tupperware, I wouldn’t need all of you people, because I had plenty. 

I’ve learned that I didn’t get here alone.  I’ve got a very persistent husband, a big God, and a bunch of praying people.  If you had anything to do with me, you were prayed for.

I’ve learned about research.  I used to ignore the “more birthday” commercials from the American Cancer Society.  Now, I know that’s why I have more birthdays.   

I’ve learned that you need me to live as much as I need you to keep me alive.  

And, when you see tumors on a screen that you need to go after, I see the faces and futures of my children - and all really I want is for you to see that too.  

I am grateful for the host of friends and family that have stuck with me and for Dr. Sosman and Dr. Mohan - because I’m no cupcake.  

I’m thankful that you continue to do what you do, so that I can continue to do what I do. 

And now for my shameless plug.  You may have heard we brought a little race to Memphis.  Go join TEAM KJ for Miles for Melanoma Memphis so we can make it a big race!
Here's the link:
Miles for Melanoma Memphis TEAM KJ