Massey On The River

Although the Massey Challenge hasn't kicked off just yet (but oh-my-goodness - kick-off is just one month away!!) there are always lots of ways to support Massey.  And some folks have gotten their Challenge fundraising off to an early start just because they can.  Last weekend, I had the chance to show Massey some love, and to help Becky get her Challenge going, at Massey on the River.

Becky lives in the neighborhood where the event was held, so she decided to throw a pre-party and encouraged folks to donate money to the Challenge or magazines for patient areas at Massey.  Shes an amazing hostess and it was a great way to show Massey a little extra love and get the day off to a fun start.

After getting some money into Becky's Challenge pot, we headed down to the event, where we hammed it up for the camera in front of the gorgeous James River:

And then took a moment to be lady-like too: 

 We signed the tribute board, sending love out to those fighting, those who have won the battle and those we've lost:

And I got to send some extra-special love to my team:

We danced a lot:

The event was an amazing success and a reminder of just how fun supporting Massey can be - even as we're fighting such a fierce enemy.

If I Never Had Cancer

Things can get pretty heavy when you're talking about cancer.

But cancer isn't all bad.  It can actually take your life to some pretty great places.

For example:

If I hadn't had cancer, Elle Woods wouldn't have inspired me to go to law school.

(Yes, that is a true story.)

Where I became best friends with this lady:

And ended up being adopted by this awesome family:

 
And getting to be an aunt to these super-cutie girls:

(And teach them why the 'stache is to be revered.)

Thanks to chemo letting Elle inspire me, I found a great job, working for this contender for boss-of-the-year:

And because I was working there, I met this guy:

If I hadn't been inspired right in that moment, I probably wouldn't have chosen to attend law school at the University of Richmond, and probably wouldn't have bought an old house in Richmond several years later:

(Or have learned far too many details about 1940s plumbing in the South.)

And, ironically, if I hadn't been living in Richmond, I likely would have never become such good friends with this incredible girl:

(We only became besties AFTER I moved out of her city - go figure.)

I started volunteering for Massey because I was treated there, so if it wasn't for cancer, I probably would never have met these lovely ladies:

And if I hadn't become friends with those girls, none of us would have met Floyd.

And no one really wants to imagine a world without Floyd.

There are lots of things about the fight against cancer I would never in a million years want to do again.  But there are lots of ways its changed my life that I would never want to give back either.

September Committee Meeting

It takes a lot of time, energy, and hard work to get the Massey Challenge message out into the Richmond community.  This year, I am honored to be the Chair of the committee thats going to make that happen.

I have been on the Massey Challenge committee for several years and was so excited and honored to be asked to take on the roll of Chair this year.  With two new liasons from Massey's Development Office at the helm with me, it seemed like a great year to change things up a little.  We started by expanding the committee to include 20 creative, inspiring, and passionate individuals from all over Richmond's community.  And we were lucky enough to have the folks over at Selba offer to host our monthly meetings.

Ill admit, part of why I love the committee so much is that its made up of people that I simply love.  Whether I've known them for years, like Julie:

(Please ignore the fact that I am extremely jet-lagged and stuffering from an early-season cold in all of these pictures!).

Or just a few months, like Jay:

The committee that has come together to make the 2013 Massey Challenge a success has already formed such strong bonds, that its become commonplace to find folks gathered well before our meetings begin to catch up on life before getting down to business:

But once we do get down to business, its pretty serious work.  Planning is still in its early stages for 2013, so there is a lot to mull over with things like sponsorships and recruitment about to get rolling and with so many amazing Richmond businesses that want to support the Challenge by partnering with us to hold third-party events between November and April.

And tons of brainstorming to be done to make the first ever Massey Mile a success:

I wont give away too many of our secrets, but among that list Becky is compiling are the words "bounce house", "water balloons", and "antique cars".  Seriously.

But at nearly one month away from the kick-off of the Challenge, we're nearly ready to get out an encourage Richmond to "Live Local, Give Local" in support of Massey!

And after most meetings, you can find some of us gathered for dinner, usually talking the ear off of whoever is nearby about the Challenge and why they should accept it.  Last week was no exception, as we made friends with our amazing bartender, Lance, who told us part of his own story.  I think we pretty much convinced him to join the Challenge along with us this year.  Which alone definitely made the night a success. 





Running Amongst The Lemons

No - There isn't a lemon grove hiding out in Richmond.  

But us Richmonders are crazy-lucky to get to live among the amazing ladies of Lululemon Athletica Short Pump Store.  They do amazing things every week to make our community happier, healthier, and more beautiful inside and out.  Don't believe me?  Check out the profiles of their amazing ambassadors who living among us here or their calendar of events here. 

Last year, Julie and I had the pleasure of meeting Brooke Wyman at Sportsbackers' Media Day for the Monument Avenue 10k.  I was immediately taken with her beautiful personality and the warmth that just shines through her.  So when she told us that Lululemon has a Thursday evening running club, I was interested immediately.  Even more so when she let us in on the fact that they call it "5k and Chardonnay".  I mean - whats not to like?   

So whenever a Thursday permits, Julie, Becky, and I try to meet the Lemons for a run around the city.  Last Thursday was no exception as Becky and I decided to sneak in a last warm, sunny run with them.

If the great company weren't reason enough to head out for a run, the directions they give us to follow:

Always end up at Palani Drive for a beer or two and some really great food:

Over the last year, Brooke and Alli Morris (another amazing Lemon) have blown me away with the way they have taken on their support of the Massey Challenge.  Over the course of a few runs last spring they gradually learned my story and the stories of others and more about the Massey Challenge.  Last year they surprised Julie and I with the news that they were generously awarding their 10k spirit group winnings to our cause.  And they have continued to support me and the Challenge with their friendship, laughter, and love.

Thats another reason I love the Challenge.  You never know the friends you'll find through it.

Like Alli:    

Or Brooke:

If you ever want to run amongst some seriously awesome women and men, you can find them gathering at Palani Drive on Thursdays at 6pm.  They run some great 3 mileish routes and laugh a lot after.  Don't worry if you are slow - I almost always bring up the rear and Brooke and Alli and the rest of the group are always right there cheering me on when I'm (finally) finished.  Its one of the most inspiring places to be on Thursdays in Richmond.  I promise.   

Am I Really In This Room?

Sometimes the Massey Challenge is awesome because it lets me do things I always hoped to do.  Years ago, when I first started volunteering with Massey, I thought it would be awesome to sit on its Advisory Board someday.  But that day seemed decades off - after I had really proven myself worthy of the honor.

And then on Tuesday, somehow I was among the people sitting in this meeting:

Yeah.  Its crazy.  I'm an ex officio member of the Advisory Board.  I mean - my name is even listed among so many crazy-accomplished people here.

It was a pretty surreal day.  On the drive over my emotions were everywhere.

First I was crazy-thrilled - I was actually going to an Advisory Board Meeting!!

And then I was totally nervous - I mean, I was going to an Advisory Board meeting!

And then I felt super flattered and honored to get to sit among such an accomplished group of people.

And then, since I turn into a total fan-girl whenever I get to be in the same room as him, I got completely giddy at the thought of being in a meeting with Dr. Ginder.

Heck, even Ludwig wanted in on the excitement:

(I'm kidding.  But I felt like he deserved a blog shout out.  It would have been pretty funny if I rolled in with at teddy bear though, huh?)

I really, really wanted to document my first Advisory Board experience for this blog, and so I would always remember how exciting it was, but I didn't want to be "that girl" and leave everyone wondering what on earth I was up so.  So this is all I got:

So at the reception following the meeting, Julie and I decided to try to get at least one good picture for posterity's sake.

But my darling friend Travis decided to photo bomb us first.

And the my smile got too cheesy:

But finally we had some success:

I am so honored to get to sit among such incredible people this year and to learn from them.  I'm also so excited for this opportunity to learn more about Massey - and to share that information here with all of you!

My Story - Part 3

When I was in high school, my mother was diagnosed with breast cancer.  I was your standard self-centered teen back then and, to be honest, I don't remember much of her diagnosis or treatment.  It didnt seem to have much to do with me.  A few years later, I remember hearing that an aunt on my father's side had received a similar diagnosis.  But aside from a few prayers sent her away, it didnt impact my life at all.

Until the spring of 2010, when my mom decided to be tested for the BRCA gene mutation.

*   *   *

"BRCA" is the acronym for the gene mutuation that casues heredetary breast and ovarian cancer syndrome.  I'm not a scientist, but my understanding is that everyone has two BRCA1 genes and two BRCA2 genes.  If someone has a mutation on one of these genes, their risk for developing certain cancers increases, like this:

BRCA1 mutation	36 percent to 85 percent lifetime risk for breast cancer 40 percent to 60 percent lifetime risk for second breast cancer (not reappearance of first tumor) 20 percent to 60 percent lifetime risk for ovarian cancer Increased risk for other cancer types, such as prostate cancer
BRCA2 mutation	36 percent to 85 percent lifetime risk for breast cancer (in females) 6 percent lifetime risk for breast cancer (in males) Up to 27 percent lifetime risk for ovarian cancer Increased risk for other cancer types, such as pancreatic, prostate, laryngeal, stomach cancer and melanoma

(Those numbers are from here).  Today, physicians can test to see whether an individual carries one of these gene mutations.  If so, that person can elect to take certain preventative measures to reduce their elevated risk of cancer.  That is what my mom wanted to do if she had a positive test result.

I felt strongly that my mom didnt need the test.  It had been so many years since her own diagnosis, and she had been doing well since.  And we really don't have an extensive family history of breast cancer - or any other type of cancer.  And, honestly, I didn't want to know - I had faced cancer once, and had no desire to know if it might be headed my way again. 

I never for a second thought her result would be a positive one.  But it was.  The BRCA1 mutation runs in my family

*   *   *

Even after this result came back, I still didn't want the test for myself.  But I had put my trust in Dr. Ginder for years and years, so when he insisted that I be tested I marched myself over to the genetic counseling team at Massey, where Heather Creswick took a blood sample and sent it on its way.  Honestly - I was still pretty sure my result would be negative. 

Unfortunately, a few weeks later, Heather had different news - I also carry the BRCA1 mutation.

Hearing her tell me this was almost harder than when I received my Hodgkin's diagnosis.  Unlike that time, I understood the diagnosis now.  I asked Heather if this result explained why I had developed Hodgkin's in the first place.  There is still no concrete answer for why otherwise healthy, active, young people develop that particular lymphoma, and I hoped that maybe, if nothing else, in this new diagnosis there would also be an answer to the question that has long plagued my mind with respect to the old one.  But Heather had looked and didn't find any research connecting the two.

Heather finally handed me the papers bearing my diagnosis in black in white and I told her would call Dr. Ginder that afternoon.  As I wound my way through the MCV campus to my car, I wished for the first time in years that it wasn’t quite so full of familiar faces.  The last thing I wanted was for someone I knew to find me in that moment. 

*   *   *

I didn't walk to my car.  Instead, I found myself wandering the streets around MCV trying to make sense of what I had just learned.  It was different from my Hodgkin's diagnosis - when it seemed a given to tell friends what was going on.  This time, it seemed worthless to call anyone - how would they understand?  How could I explain that in many ways this diagnosis rocked me in a much deeper way than when I learned a fight with Hodgkin's was before me?  This time there was no named enemy - just some vague possibility somewhere in the future.

And how could I explain the sudden realization that for many years I had been, apparently, operating under the self-righteous belief that I somehow didn't deserve another unfavorable diagnosis?  That I somehow deserved to escape future illness and pain because I had already paid my dues?  For the first time it occured to me that somewhere deep down I felt like I had already been through the diagnosis.  The staging.  The treatments that didn't work.  The treatments that finally did.  The follow up appointments.  The recurrence scares.  How coudld I explain that part of me felt like I had given cancer my youth, my relationships, and thousands upon thousands of dollars, and that I didn't deserve any more?  That what I really found myself asking was - what more could this disease could possibly ask of me?

It was one of the most frustrating and scary mornings of my life.

*   *   *

But, as he has done so many times for me, Dr. Ginder stepped in to pull me out of that grey place.  As Massey is so good at doing, he quickly expanded my team to include Dr. Harry Bear and Dr. Cecila Boardman.  And they all agreed - combined with the risk for secondary cancers as a result of the treatment I had received for Hodgkin's, the BRCA1 mutation likely made my personal risk of developing breast or ovarian cancer very, very, very high.  But there are still no studies on that particular combination of factors, so we can't be sure exactly how high.  So what to do?

My team recommended an immediate double-mastectomy and a hysterectomy by the time I am 40. 

Every woman (and man - men carry it too!) who receives a BRCA diagnosis has to make the very personal decision of what type of action they want to take.  The gravity of that decision doesnt really sink in until its time to make it.  I adore each of my physicians at Massey.  I trust them implicitly.  And I know I receive the very best care in their hands.  But after months of praying, talking with friends, and research of my own, I just couldn't reconcile in my heart going down the road they were recommending.  A big reason why is because I so deeply believe in the research being done at Massey.  And I believe that if I ever do receive another cancer diagnosis, we will have treatments and cures beyond what I can even imagine today.  I can't with good faith go through those surgeries when monitoring is available.  When progress is still being made.  When we are fighting such a good, hard fight against this disease and making headway every. single. day.

I know I worry my doctors in making that decision.  But I also know the amount of hope and faith I have in the work being done in so many labs will give me the strength to face whatever may come in the future.  And that I will have awesome doctors by my side to help me down that road too.   

So, instead of surgery, I pay lots of visits to Massey.  Each year they give me an MRI, a mammogram, lots of x-rays, an internal ultrasound, a CT scan, more physical exams that I'd care to count, lots of blood work, along with all the normal (really fun) gynecological stuff.  The hope is that if one of them is always in my business, we'll catch anything early - and be able to treat it successfully.  And I have total faith that if that time comes, we'll beat whatever we find.

My Story - Part 2

Its difficult to explain what it feels like to walk out of a hospital with nothing more than a cancer diagnosis and a list of names that mean nothing to you.  To have had your normal 23-year-old world flipped upside down in the matter of an hour.  Where the 24 hours earlier my biggest worries had been where happy hour should be and what cut of jeans was most flattering on me, I was thrust quickly into a world which much bigger worries.

Over the next day or so, called my closest friends and very matter-of-factly explained the diagnosis to them.  While they cried, I didn't.  In many ways, I was relieved.  For months, along with the swollen lymph node, I had been experiencing symptoms that I couldn't make sense of.  I would fall asleep at 7pm, sleeping straight through until 7am and wake feeling like I had pulled an all-nighter.  I went from running 5 miles a day to being unable to make it through just one block.  Night sweats would drench the bed, causing mid-night sheet and pajama changes.  I had never connected these dots until, finally, the diagnosis made them make sense.

*   *   *

My mom loves to tell the story of how I bit my pediatrician when I was young and needed to get a shot.  I have never, ever liked doctors.  But when I met Gordon Ginder, I knew I would like him.

Dr. Ginder's name wasn't on the list I had received from the ENT.  In what I can now describe only as a twist of fate, I happened to know someone who was working in Dr. Ginder's lab when I was diagnosed.  He specializes in lymphoma and is the Director of the Massey Cancer Center.  Even so, I was pretty much brand-new to Richmond, and I am sure I never would never have found Dr. Ginder if not for knowing someone who worked with him.  And I really dont know how my story would have panned out if I hadn't.

*   *   *

Dr. Ginder re-ran my biopsy and came up with the same diagnosis - Hodgkin's Lymphoma.  We then went about the weeks long process of staging my disease - blood work, CT scans, x-rays, and a bone marrow biopsy would teach us that my cancer was stage IIB.  Stage II means that I had more than two lymph node regions involved on one side of my diaphragm.  For me, these were in my head, neck, chest, and abdomen.  B means I had systemic symptoms - like the night sweats and extreme fatigue.  The treatment plan we came up with consisted of 6 rounds of intravenous chemotherapy followed by about 3 months of radiation therapy.

My chemotherapy was administered through an IV in my left arm.  They administer it in a room full of comfy arm chairs and TVs, helping the hours to pass pretty easily.  After the first scary and frustrating dose (the one where they explain all of the things that can go wrong while poison is being pumped into your body, and why you need to take 8 pills just to counteract some of the fastest developing side-effects, and where you are inevitably thinking "oh my goodness how can this possibly go well??"), chemo became a "normal" part of life and the infusion room became something like a second living room.  I grew close to the nurses there, talking about life and plans and their families.  It was a good place to read a book and I took in a lot of daytime TV I had missed while working.  I even studied for the LSAT there.  I ended up needing an extra round of chemo because my cancer didn't respond exactly as planned, but I also didnt lose my hair as expected, so it seemed like a decent trade to my 23-year-old self.

Because of where my cancer was, my radiation therapy involved a mesh mask made to fit my face.  While I was in the radiation phase of my treatment, five days a week they would place the mask over my face, screw my head into the table to immobilize it in exactly the same way, and a large machine would quickly zap me.  Along with the mask, I was given four tattoos that would further help align everything correctly.  Even though I have other tattoos, those four mean the most to me.  Every time I seem one of them, its a reminder of the months spent in that room.  All in all, a radiation appointment would last under 20 minutes.  It was hard to believe something so quick was destroying a killer. 

*   *   *

No one's treatment journey is exactly the same.  And being 23 with cancer changed not just my life, but the lives of my friends as well.  Shopping trips changed from searches for Friday night outfits to searches for scarves to help cover my thinning hair.  My body didnt replenish its white blood cell count between doses, so the same friends that had shared cabs home from bars with me had to learn to give me daily injections of the drug that would help make that happen.  Saturday nights out changed to gatherings in my apartment over movies and cookie baking.  Friends I had once cooked dinner with now picked up meatball subs after chemo for me, because it was the only thing my stomach could handle.  Even after my treatment was over, things didnt just go back to the way they used to be.  The smell of beer and wine made my stomach turn, beach days were limited since I wasnt allowed in the sun, and it took quite awhile for my energy to return back to a "normal" level.  Cancer stole our early 20s from all of us in a lot of ways.  But it bonded us all in a lot of very special ways too.   

*   *   *

After months of chemotherapy, my nurses sent me out of the infusion room a final time amidst a shower of homemade confetti.  And a few months after that, I walked away from radiation oncology for the last time - given permission just days before Thanksgiving to leave the state to celebrate the holiday with my loved ones.  

I was in remission.

My Story - Part I

My Massey story began 10 years ago.  There is a short version that I tell when I speak, or in emails I circulate to fundraise most years.  Theres an even more condensed version I tell those I run into around town or new friends.  But in reality, there is much more to it than what makes it into those brief sketches.  Here is the beginning:

As a little girl, I came down with strep throat all.the.time.  I remember several Halloweens that involved trips to the doctor just before trick-or-treating for a strep culture.  But it had been awhile since my last bout when I came down with a lovely case of strep in July of 2002.  I saw my doctor and was given a course of penicilln - just as I had as a kid.

But this time, things didnt play out as they had in the past.  After taking the first dose of penecilin, I went to bed, only to wake up covered in angry, red hives.  It turns out that I had developed a drug allergy over the years.  I called my doctor who had me stop taking the medicine - he was fairly certain that what I had already gotten into me would be enough to get rid of the strep.  And he was right.  The hives healed and my sickness was gone.

Except for one lymph node on the right side of my neck.  That guy stayed huge.  He didnt hurt.  But when I touched my neck - he was definitely there.

For months I followed up with my doctor.  Literally.  Over the span of seven months we would try various antibiotics, which would reduce the size of the node, only to have it grow again the moment a course was finished.  Over and over - for at least 10 rounds of antibiotics, we played this game.  He was fairly certain it was a colony of strep that had housed itself there.  I had no reason not to agree with him. 

But someone did.  One day my nurse practitioner asked him: "Do you think this could be something else?  Remember we had that one young patient . . ."  Before she could finish, he cut her off with a curt: "Its not that."

I think she knew then what was really going on.  But I had no idea.

*   *   *

February came and I headed west to backpack my way through some of our national parks.  I noticed the climb through the Grand Canyon was harder than I expected, but chalked it up to altitude.  And when making my way through Arches left me fatigued, I figured I hadn't hydrated enough.  So I was sure to keep several full bottles of water with me as I ventured into the back country of Canyonlands National Park.  On day two, one of those bottles fell into a small canyon.  And as my partner climbed down to fetch it, I set the timer on my camera to capture this moment:

As I stood from taking this picture, I reached to scratch my neck.  And I found it wasn't only the one lymph node that was swollen - now there were two.

*   *   *

Fast forward two weeks and I am waiting in my ENT's office for the results of a biopsy.  He had elected to do surgery to remove one of the lymph nodes in my neck in order to get the best sample.  I dont remember the entire conversation.  But I do remember him telling me that the results indicated that "it was malignant".  Demonstrating my complete lack of knowledge about cancer, I smiled and replied, "thats the good one, right?"  The fact that he handed me a list of five oncologists' names told me I was wrong.

I was 23.  And I had cancer.