We Pedal On

We got to West Point Friday night just in time to pick up our registration packet and drop off our bikes.  I got to meet my first friend from AstraZeneca.  Priscilla was a riot of optimism and enthusiasm, asking to take photos and promising me that we would see each other in the morning. She assured me that we would encourage each other throughout the 100 miles. She did not lie

We had time to grab some delicious pasta dinner, get Dan and the other kids settled into our Airbnb (Dan gets extra points for being the lone driver in the later car) and then go to bed. No late night Cav's watching for this girl--although it seems that they did quite well, even without my attention.

Jamie gets extra chauffeur points for getting up so early to take us to the starting line and a round of team points for getting snazzy custom RamerNation jerseys made for the three of us. The morning weather was mercifully cool. West Point was stunningly beautiful. The course, as advertised, was hilly throughout. I felt great for the first 45 miles.

I met Orlaigh, a woman from Ireland, (actually from the same town that Laurie just returned from) who now lives in Long Island. She was riding 100 to honor her mother, who had breast cancer. I hate cancer, kind of a lot.

I thought a lot about the people who travel with me in spirit. My phone, which carries a fantastic biking playlist from my volleyball girlfriends, dinged text messages of encouragement throughout the race. Jamie, Dan and the kids waited for us at the rest stops and finish line, ever supportive. I saw a ladybug on a flag, a symbol of my friend Gabby. I felt both a rush of grief and a dose of her encouragement, something which always bolstered my confidence. We don't really do anything alone in this life, regardless of how it may appear.

I came to this century ride with Alex (who absolutely killed it, finishing an hour and a half before us) and Laurie (who was announced as the 4th highest individual fundraiser). However, we ended up riding most of the miles alone, only bumping into one other at rest stops, which is how these races tend to work out.

Like a starry sky filled with constellations, there are vast stretches of quiet in between. Throughout the ride, I thought about how Alex was somewhere in front of me and my sister just behind me, connected by invisible bonds.  My husband would be cheering just up ahead. Glimpses of Brent, Lauren and Olivia could sustain me. Jamie often drove by, shouting encouragement through the window.

I met some researchers who had good things to share about their work.  This lifted my spirits as I considered Lauren's current issue. Potential issue, I should correct, because it is not a problem until it is a biopsy confirmed problem. 

I say this kind of a lot, a mutant mantra for mental health.  Because there are lots of worries along the way, which could rob me of today's blessings if I allowed them to dominate my thoughts.  It is difficult mentally to tamp down worry, particularly when I have intimate knowledge of how long and difficult a sarcoma treatment is.  But today is not that day-- which is another handy phrase.

It got hotter in the afternoon, but the folks from CRI did a fantastic job of providing support. There was food, water, Gatorade etc, every 10 miles or so, and the SAG trucks patrolled the routes to make sure that everyone was covered. Laurie struggled at the very beginning and tailed the pack of 100 milers.  She told me that for the first 40 she had her own personal SAG driver, Paul, who insisted that he would not leave her. And he didn't, until she began passing people, and met up with me at mile 55.  It was an extremely well run event.

I biked with Debora, another part of the AstroZeneca team, an ebullient woman who is comfortable hugging a sweaty stranger on a bike. She evoked Gabby's social fearlessness and perpetual optimism.  

In the second half of the ride, the century riders chatted more at the rest stops, encouraging one another, plying pickle juice on those who were cramping and plotting out the distance remaining. Breaking down the miles we had yet to grind out, into smaller more manageable chunks really helped. "Only 12 miles to the next rest stop!"

Around 70 miles in, just after passing a SAG truck, I lost use of my brakes.  Laurie, ever practical, pointed out that I wouldn't need them for at least the next quarter of a mile, which was clearly uphill, so we climbed.  At the top, there happened to be three riders from AstraZeneca who were stopped at the crest. They kindly helped me with what ended up being a simple fix, something that any experienced rider would know how to handle.  A downhill followed, one that was perilous even with functioning brakes. Without their help, I would have had to wait for the SAG truck. It felt somehow prophetic to see how these researcher-riders became directly involved with my plight. 

Laurie and I later worked our way up a ridiculously steep and winding road that hugs the rough rock face of a mountain, with the Hudson River flowing below. We had come down that gloriously scenic hill early in the morning, when our adrenaline was rushing, and our legs were fresh. We did not stop for a photos in our haste. Racing along, I had seen a huge bird take flight and I thought about how extraordinarily beautiful, but fleeting it was. 

As we reached that same peak after a long climb on our late afternoon return, Jamie was waiting there to take our photo, capturing us sweaty and tired. It was still a glorious view. As we posed, a biplane which I can only describe as 'Gabby Yellow' came out of nowhere, passing close, and commanding our attention.  It was perfect.

An exhilarating downhill followed.  However, we did not return through West Point. The course took us instead a different route that involved some hills that Laurie and I neither anticipated nor appreciated. There may have been some swearing. We passed a woman who shouted encouragement to us, telling us that we were only three miles from the finish.

Heartened, we pedaled on.

Two miles later, we read a sign that said '5 Miles To Go.' There was definitely swearing at this point. And murder plotted. Disheartened, but determined, we pedaled on.

   

Finally at the finish, I hugged my family--Alex looking irritatingly well rested--and we cheered Laurie and our new friends in.  Dan bustled us to a massage tent where angels of mercy put their hands on our positively disgusting bodies, encrusted with 100 miles worth of crystalized sweat (sorry to be gross, but it was like sand on my face)  They stretched us and pummeled our muscles. It felt positively amazing and I think this saved me, because believe it or not, I was not sore the next day.

Over $900,000 was raised at the event for immunotherapy research. I know that more will roll in for CRI until Sept 1, when fundraising is finalized. It was an honor to be part of this effort, and I am grateful for every bit of encouragement and support along the way

.

In the morning, I sipped coffee and listened to musical gift from my volleyball friends, a lyrical affirmation of their belief in me. Laurie and I talked about how fortunate we had been in the weather.  On Sunday, it neared 80 degrees by 9am.  Biking in that kind of heat would have been an altogether different sort of challenge.

I was enjoying the beautiful gardens at our airbnb and watching Olivia feed a goose and her four fluffy chicks. It suddenly washed over me that there was nothing left to do, no 100 mile buffer between me and Lauren's surgery. 

This is the next step.

Deep breath.

Heartened, or disheartened, we will pedal on.  We do not do this alone.

Celebrating champions and building teams

Making lemonade out of cancelled plans to Chicago, Dan, Alex and I went downtown for the Cav’s Championship parade last Wednesday.  Oddly enough, we found traffic in Cleveland to be manageable, parked on the street for free, and walked a dozen blocks to Mall B where the rally was scheduled. It was a beautiful day, although I am not sure what sort of adverse weather could have dampened the spirits of those who came to witness and celebrate the end of 'The Drought.'  

There was no cell reception with 1.3 million people downtown. The three of us sat together on the lawn, enjoyed the music and video clips displayed on the giant screens, chatted, and napped in the sunshine throughout the afternoon-although this last part was a painful mistake that I did not discover until later. I have never been in a crowd so large and yet so courteous and patient. The parade was exceptionally slow, as throngs of people hindered its progress.  The oft repeated line by the announcers at the rally was “Your champions will be here soon.”

The RamerNation are pro’s at waiting.  We wait for pathology results that have profound impact on the form of both our immediate and distant future. We have waited for weeks in hospital in hopes of health returning.  We wait as clinical trials are being developed. In many regards, Clevelanders can appreciate this level of patience, having waited fifty two years for this celebration.  I suppose that in this context, a few more hours for these folks, seemed of little consequence.  

After a few words, presentations and proclamations by politicians, Dan Gilbert, the owner of the Cavs, spoke of his gratitude and admiration for the folks who work with him in the organization.  His had the vision of bringing a championship to the city 11 years ago, and made a financial commitment to this end.

Lebron James, given the opportunity to speak ‘from the heart’, chose to warmly and affectionately honor each of his teammates for their contribution and dedication to the team: Kevin Love, for sacrificing prestige in Minnesota, Delly, remarkable for overcoming limitations and expectations, James Jones, never complaining about playing less than he was accustomed to and always being ready when his number was called.  The list went on, personal and professional, heaping praise and spreading love all around.

Some might debate if Lebron is the best player of this generation, but he was the unquestioned MVP of the finals, leading the series in average points, rebounds, assists, steals and blocks. It was remarkable how he mentioned himself only in relation to the importance of the contributions of others. He epitomized leadership, humility and teamwork.   

While he spoke conversationally, and some would criticize, a bit too informally with regard to language, I found it to be refreshingly authentic in a time when images are cultivated or sculpted for the public in social media. Lebron's salty words seemed far less significant to me, than the love that he liberally poured over everyone and everything.

We left with the smiling crowds, who glowed from sun exposure and a shift in mentality.  We have shed a burden as a city with this bit of success. Our future seems brighter, more optimistic. It is far more than sport.  It is the affirmation of something greater and you could absolutely feel the change in that crowd.  

As we walked back, I thought about the team building that was done with the Cavs.  Dan Gilbert had a vision, and put significant resources behind that vision, assembling a combination of talent that could succeed. Lebron James clearly displays exceptional skill and is a force of will that alters game outcomes, but he was not enough. Over time, players filled around him who could compliment his strengths, adjust and who possessed a willingness to do whatever it took for the team to succeed.  The city of Cleveland has benefited, and the fans came out en-mass to show their gratitude.

I always carry things over to cancer, the prism that some might argue distorts my perspective, but unarguably has had a profound impact on our lives. I thought that like the Cav's, the Cancer Moonshot requires this same level of teamwork in approach a daunting challenge.  We are currently witnessing the assembly of just such a team.

In January, President Obama called for a Cancer Moonshot, and put Vice President Biden in charge of it, making all of the resources of the federal government available for this mission. Joe Biden has both the vision and the personal motivation:  He lost his son Beau to a brain tumor. Since this announcement, he has been assembling panels to address the things that hinder progress in cancer.  I am encouraged with the breadth and depth of these inquiries, rather than simply pouring funds into broken system.  Biden is examining the systems and making structural changes to help research, always asking those involved what is needed.

And they are recruiting the best talent from across the country to fill these blue ribbon panels.

Sean Parker made his money from FaceBook and Napster.  He recently donated $250 million to support cancer research. Last week, I learned that his collaborative group, some who are serving on blue ribbon panels, obtained NIH approval for CRISPR trials (gene editing technology) in humans,  using genetically engineered T cells to fight cancer, essentially combining two of the most promising advances in cancer treatment (immunotherapy and genetic engineering). This is more exciting for me read about, than watching Lebron James get a triple double.

I have long followed the research of researcher Jim Allison, who, like Matthew Delavadova, worked diligently for years despite the naysayers. Lebron praised Delly's dedication, tenaciousness and his deafness to criticism. "That is a guy who never cared that some guys say 'Delly's not fast enough, Delly's not strong enough, Delly can't shoot well enough. Delly's not an NBA player.' Well guess what? Delly is a champion."   Like Delly, Jim Allison overcame conventional wisdom about the role of the immune system in cancer, worked hard, produced a breakthrough therapy, added another pillar to cancer treatment and is now a key player in the Cancer Moonshot.  He is clearly a champion.

Lebron talked about having 'unfinished business' with Mo Williams which they were able to address when Mo returned to Cleveland.  I imagine that with collaboration, researchers whose professional lives have taken them to different institutions will be brought together once again.  I would love for these researchers to mirror this intensity as they finish their work together.

Lebron called out players like Jordan McRae and James Jones who didn't get as much glory, as many shots or much playing time over the season.  But he recognized that their hard work behind the scenes which made the team stronger.  I know that there are countless researchers that work late in their labs, supporting those who sit prominently on the panels. I am grateful for their efforts as well.

Lebron James spoke movingly about the support of the community.  While he did not speak much of how he left Cleveland for a time, he did speak with emotion about how important it was for him to return to this community, to come home. The feeling was mutual. In Cleveland, watch parties sold out while the Cav's were on the road, filling both the empty arena and the outside spaces in record time. I am hopeful that with the upcoming opportunities in cancer, trials fill up just as quickly. 

A week after witnessing the history-making celebration of Cleveland's first national title in over half a century, I was privileged to sit in a much smaller crowd, and listen to Vice President Joe Biden speak about this new team and the game plan- which is hugely promising.

I look forward to this next victory parade with much anticipation.

The crowds will be massive.

Being the underdog

We live in northeast Ohio.

While this might not seem significant to most, beyond noting that winter can be long and brutal,  there is a soul crushing pattern in sport that has lasted for over half a century.   We have slogged through decades of mediocrity only to have a few shining moments of hope, the dashing of which can be reduced to a handful of defining words: 'The Shot," "The Drive," "The Fumble."  Even in the off season, when LeBron James took the opportunity to play elsewhere, the blow was dubbed "The Decision."  

While some think that there is a pessimism or fatalism that comes with following sport in Cleveland,  I notice a self-depreciating realism in it.  A popular shirt around here reads: "Just One Before I Die!" Snark, with an undertone of truth, and a hint of desperation. 

Last year, Brent was facing bone marrow transplant as the Cav's entered the postseason. We watched the games as a family, wishing good things for the city and following players that Brent and Lauren had met through Flashes of Hope.

In June,  I remember things being pretty dicey for the RamerNation, between Lauren's brain surgery and Brent trying desperately to get to transplant.  While I vaguely remember that Cleveland lost in the NBA finals, my attention was clearly elsewhere.  It was disappointing for Brent, having so many of our players injured.  For me however, it was not radically different from the long tradition of Cleveland-could-have-beens.

Bone marrow transplant in July brought only fleeting success: Brent relapsed in September.  By Thanksgiving, Brent was desperately ill, with heavy disease burden, transfusion dependent, and completely vulnerable to infection.  We had an exceptionally difficult meeting with his team of doctors, in which Brent selected the most aggressive but unproven treatment, one fraught with possibility for complications and deemed unlikely to succeed.  But it at least offered a slim chance at coming home. 

Against the odds, we celebrated Christmas full of joy, at home, with renewed hope.  

By January, Brent had another relapse, which brought crushing despair. In February, Lauren appeared to have tumor regrowth as well, so we got busy making plans.  With limited options, Brent again selected an aggressive treatment, one that was completely unproven, and as we were told, unlikely to work.  

On Mother's Day,  we received the fantastic news that Lauren had a stable brain MRI and Brent had achieved another improbable remission.  I do not assume that is the end of our challenges, but it is a victory, albeit a tenuous one.

We have been thoroughly enjoying the basketball postseason this year.  As Cleveland swept Detroit and Atlanta,  I said that I didn't need any series to be close.  Boring,  I have often said, is beautiful.    This applies both to sport and to health.  

However, the Cavaliers ended up with a daunting challenge, one that was drummed into our heads over the past week: no NBA team in history has ever come back from a 3-1 deficit in the finals.  I wanted to believe that just because it hadn't been done, didn't mean that it couldn't be done.  For me, the parallels are pretty obvious. 

Against all odds, The Cleveland Cavaliers defied the naysayers, ended 'The Drought" and brought home the NBA title in spectacular fashion, winning in the last seconds of game seven on the road.  The city celebrates tonight.  

The RamerNation witnessed this together. 

I watched, overwhelmed in the aftermath, while LeBron tearfully expressed his feelings on the court. "I gave everything that I had.  I poured my heart, my blood, my sweat my tears into this game and, against all odds. Against all odds--  I don't know why we want to take the hardest road. I don't know why the Man Above gives me the hardest road, but the Big Man Above don't put you in a situation that you cannot handle. And I just kept that same positive attitude, like, instead of saying 'Why me?' I was saying, 'This is what He wants me to do.' Cleveland, this is for you! I am home!"

Hope rises, once again.  I am a Clevelander, after all.  And if the Cav's can do what has never been done before, perhaps we might as well. Basketball may be just a game to some, but for us, this was an inspiring and transcendent performance, which defied conventional wisdom and previous experience. 

I will always cheer for the underdog, who finds so much stacked against them, because we are that underdog on most days. We are working hard, fighting our way back, trying to extend the series.

It can be done. 

Welcome home.

'Mayberry' no more

Yesterday was Brent's 15th birthday.  I looked at him with bewilderment, like so many other mothers do as their children morph into adults, right under their nose.  I remembered his birthday three years earlier, as his hair fell out at the beginning of his osteosarcoma treatment and as I worried about our collective future.  Today, we have much to celebrate and so much to be grateful for.


Along with being the beginning of 'birthday season' in our house, September is pediatric cancer awareness month.  Add this to the beginning of school chaos and you can see that we have certainly been hopping. But in stark contrast to our fall of three years ago, it has been a really wonderful sort of busy. 


We are most grateful for the many instances of pediatric cancer being featured over the past month, such as the efforts of Hoda Kotb and the decision by the Cincinnati Bengals to support Devon Still and his young daughter who is currently battling advanced neuroblastoma.  Sharing these stories, featuring children in their cancer struggle is most meaningful, particularly when they also provide opportunities to help fund research.

To cite our own example, a week ago, Brent participated in the annual Flashes of Hope event.  He suited up in a tux and was paired up with James Jones of the Cleveland Cavaliers, walking the runway at Quicken Loans Arena along with other pediatric cancer survivors in front of over 1500 people.  He looked great, very confident in his stride and most outrageously, pulled out his phone and took a selfie on the catwalk. We hooted and howled from our seats.



We have long teased Brent for being Mayberry-like, in stark contrast to Lauren's outgoing "Hollywood" personality. It appears that we are going to have to amend our nickname...perhaps "Broadway" would be more fitting for Brent now, reflecting his affection for New York City.


The audience watched a video in which Alex and some other siblings describe the impact of cancer on their lives.  They may have been unaffected physically, but certainly have not been spared emotionally. 


http://vimeo.com/107935878


Then Dan and I watched the bidding, as the research dollars were collected.  I am unable to articulate how meaningful it is to witness the generosity of Dan Gilbert, of the Cavaliers, of Clevelanders in general.  I believe that the bad news too often gets the attention.  I was reminded again of how wonderfully kind people can be, whether we choose to focus on it or not.  


I volunteer at University Hospitals, and on Monday was asked by a woman how it was that I came to be involved.  I shared the basic outline of our story, of our four pediatric cancers.  She looked at me wide-eyed, fairly horrified, and asked,"How do you deal with it?"  I assured her that the kids were doing fine, melanoma treatment withstanding.  Really.  Truly.


But today, thinking about it, I know that the better answer lies in having faith.  I really, really struggle with the notion that it is all beyond my control, which I openly acknowledge.  But every morning, to bolster my faith, I read about the latest research, about all cancers, not knowing what cancer I might need to understand next.  I know that this may seem odd, but I find great comfort in the knowledge that scientists, physicians and researchers are all working hard to figure out a solution.  It reassures me, and helps me to cope. 


It gives me hope.


So, last week, in a magical evening, over one million dollars was raised via Flashes of Hope, dollars that will fund research, and by extension, helped to support my faith.  Because on this evening, I saw my son who lost his right pelvis to cancer, and who was supposed to lose that leg altogether, walk confidently across the stage, happy and healthy.  It was a celebration.  An affirmation.  A gift from God and an answer to countless prayers.


While I know that we are not necessarily done with cancer, we have been enormously blessed to get to this point.  I am both grateful and hopeful.


The gold ribbons have been exchanged for pink ones now, as breast cancer gets center stage for a month. But for us, every month is about pediatric cancer.




Many thanks to Flashes of Hope, Allison Clarke and the Cleveland Cavaliers for providing such a terrific night, supporting children with cancer as well as the researchers that are trying to cure them.