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

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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.

What doesn't kill you...

I spent nearly two months in the hospital this year with Brent, who is thankfully regaining his strength every day. I have things to work out in my mind.  I really need to work out my muscles as well.  So, I have been preparing for a hundred mile bike ride on June 10th in support of immunotherapy.  I have been writing a bit as I train with my sister and son Alex, both who are joining me in the fundraising event. I thought this entry was worth sharing.

5/10 (27 miles)

It was a lighter day for us after the long ride, really just trying to keep our legs loose.  

I thought, with gratitude, about the scientific community working on cancer.  A number of people have asked me why I am biking for Cancer Research Institute, when we have historically been active in pediatric focused efforts, like Kick-It.   We still support childhood cancer research, which is seriously underfunded.  But as I pedaled along, I thought about Brent and his gauntlet-run through oncology over the past six years and the role that immunotherapy has played.  

Throughout, I have prayed for specific things--for blood counts to rise, for pain to be avoided, for healing to happen.  I prayed all the time.  But often, I simply prayed for guidance.  "Show me what to do, and I will do it."  

Back to immunotherapy.  Brent first had osteosarcoma in 2011, a huge pelvic tumor.  After he had his limb preserving surgery at MSKCC, he was plagued by infection, something that required several other surgeries, further hospitalizations and delays of his chemo, all really bad stuff.  A few months after Brent completed this regimen, I read an article about how folks with infection issues suffered less sarcoma relapse.  I always try to find an upside in our struggles and remember sharing this bit of information with our docs. "Good thing we were dogged with infection."  They were fairly horrified.  The correlation was there, but calling infection good, is like telling a bride that rain on your wedding day is considered good luck--cold comfort when a weather event ranked somewhere between a deluge and a hurricane blows over the reception tent.

We marched onward...and discovered Brent had metastatic melanoma. Curious about how common this diagnosis is in LFS, and desperately seeking treatment ideas, I shared Brent's struggle in Living LFS's online support group. A friend messaged me and offered to text a family friend about Brent, someone who "works in melanoma." Her family friend was Jim Allison, who is now a stadium filling rock star in cancer immunotherapy. Back then, he recommended doing Interferon just as our local team had suggested.  But if it should fail, he recommended that we consult Jedd Wolchok at MSKCC, a former colleague of his. Brent did almost a year of interferon, which is an immunotherapy drug.  Melanoma, thankfully did not return. But as a result, I began following immunotherapy researchers and reading as much as I could about this emerging field.

The most exciting thing for me about immunotherapy, is that it does not rely on p53 function to eradicate cancer.  With Li-Fraumeni Syndrome, Lauren and Brent have only one effective copy of p53. The work of detecting and shutting down a faulty or damaged cell is seriously impaired, which is why my children are so prone to getting cancer in the first place. If the immune system could be harnessed to detect and eradicate cancer, it would bypass a weakened cellular mechanism and not do further damage to that already sketchy process, as chemo and radiation are prone to do, quite indiscriminately.

Brent's melanoma treatment was interrupted by just this sort of collateral damage. He developed treatment induced AML, an aggressive leukemia that requires bone marrow transplant. We were fortunate to have a perfect sibling match and we spent the better part of 2015 in the hospital, fighting to just get to transplant and then going through that arduous process. (Lauren threw a recurrent brain tumor into our summer schedule. It is a ridiculous life with LFS.)  

Brent relapsed almost immediately with AML.  I prayed for health and ideas.  He became desperately ill that autumn, and his oncology team at Rainbow Babies and Children's Hospital tried to just get him home for Christmas. They proposed using the power of Alex's transplanted immune system, boosted with extra T cells, unchecked by any protective immunosuppression.  It was dangerous and uncharted and shockingly, it worked beyond their hopes, although Brent didn't achieve a complete response. We tried epigenetic therapy through the spring, trying to bridge Brent to a trial.   

As I pedaled along, absorbed with the twists and turns and how I came to be training for 100 miles in support of immunotherapy, I wondered if God speaks through Mick Jagger, because the Rolling Stones were stuck in my head--"You can't always get what you want/ but if you try sometimes, well you might find/ you get what you need." Like the persistent infection that nipped at his heels during osteosarcoma, Brent seems to have benefited from a stunningly aggressive case of necrotizing fasciitiis (which is flesh eating bacteria-I return to the notion that we live an absurdly unbelievable life)  This infection nearly killed him last summer.  No one would prescribe such a thing, but in hindsight, there may have been an upside: The giant immune response required for Brent to overcome sepsis seems to have finished off his leukemia. Certainly not what we wanted, but perhaps this was what Brent needed.

Brent lived an incarnation of the phrase "What doesn't kill you makes you stronger"  Trust me, administering a drug like nivolumab would be a far preferable way to achieve this immune response, than dealing with the surgical after-effects of this devastating infection. I support immunotherapy research to help scientists try to understand the mechanisms of the immune system and develop more refined therapies than what Brent has endured.  The immune system may be powerful, but current therapies are bluntly applied, unevenly effective and not deeply understood. CRI helps scientists advance this promising new field.

We will never know for sure, but as I look over the explanations for how Brent has survived these malignancies, science would point to the power of the immune system being a significant factor, although I do not question the power of prayer: a combination therapy.  

Brent gratefully remains in remission.

If you would like to help me support this research, click on the link below.  Many thanks!

http://www.a2c.org/RamerNation

Shaking it up

With a bit of time on my hands, while Brent naps, I thought that I would write something.  I found several empty, untitled drafts from the past two months.  I vaguely remember sitting down, but not knowing how exactly to describe what our family was doing.

In November, we successfully grafted skin from Alex and covered the large wound on Brent's back, something that has never been done before.  Alex took time from his studies at the University of Michigan to do what he was uniquely able to for his brother.  I am proud of his generosity to Brent and of the man that Alex is becoming.

While the graft has been a raging success, Brent has since developed painful lymphedema, GVHD and open wounds on his legs that have required a great deal of attention and care.  It was isolating, exhausting and discouraging for all of us, in ways that are difficult to put into words. Seeing your child in pain, unable to alleviate it, is incredibly difficult.  Causing the pain, even as we were caring for these wounds, was even harder.

Whenever I despaired, which was often, I would mentally point with gratitude to the things that were working: the absence of cancer and the success of the skin graft. I struggled this fall, trying to balance gratitude and grief. I was paralyzed emotionally, and physically weary from tending to Brent's medical requirements, discouraged without seeing progress or an end to his suffering.

I thought that I would shake things up in the new year by committing to a 100 mile bike ride that will take place in June.  The event raises funds to support immunotherapy research via Cancer Research Institute.  I registered for the race and began to train, believing that this would be good for me--mind, body and soul-- as well as benefit cancer patients like my children.

Brent's idea of shaking it up in 2017 was developing septic pneumonia, and enduring a five day stint in the PICU.

I write today from his hospital room, beginning our third week here.  My sincere hope is that we have checked the box for 'life threatening episode,' for 2017, a habit that is alarming on its own, but especially in the way that it has become routine for us.

Brent is improving slowly and we hope to return home sometime this week.

We welcome your prayers for the RamerNation, and if you were inclined, your support for Cancer Research Institute.

http://www.a2c.org/RamerNation