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Triathlete with Stage 4 lung cancer completes cross-country trek

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https://communitynews.org/2020/06/25/lawrence-triathlete-with-stage-4-lung-cancer-completes-cross-country-trek/

By Nicole Viviano

June 25, 2020

Biking across the United States is a memorable feat for anyone. One endurance athlete from Lawrenceville managed to complete the Southern Tier bike route while facing down an even greater obstacle: Stage 4 lung cancer.

Isabella de la Houssaye, 56, has lived an active lifestyle, from mountain climbing to Ironman triathlons. Her love of nature and adventure were not going to be stopped, not even by a diagnosis she says is “quite terminal.”

She wants people to understand this is not a tale of her battle with lung cancer but a chance to improve the prognosis for future patients.

Isabella de la Houssaye rode across the country, while bringing awareness to lung cancer, the same cancer she was diagnosed with in 2018.

The fact that de la Houssaye has never smoked and didn’t drink alcohol, and all together lived a healthy, active lifestyle, made the diagnosis shattering to the married mother of five and her family.

First diagnosed January 2018, de la Houssaye went through mutation testing to determine her course of treatment. By the time her cancer was discovered, it had spread from her lungs to her pelvis, spine, brain, sternum and adrenal gland, even though she just had an annual checkup months before and was declared healthy.

During the month of mutation testing following her diagnosis, her condition deteriorated until she finally found success with an experimental drug, osimertinib, which prevented the cancer from progressing. She remained stable until September 2019, at which point the cancer progressed again, and forced de la Houssaye to undergo radiation treatment to the sternum area.

Her doctors told her osimertinib works, on average, for 18 months.

The drug won’t get rid of the cancer but keeps it at bay. Still on the same treatment two years later, de la Houssaye has greatly surpassed her doctors’ initial expectations, both in terms of quantity and quality of life.

She has managed well enough that, about a year ago, the idea of taking on an adventure across the country started to circulate among her family. She had always wanted to experience the country this way, she said, and it could be a way for de la Houssaye to engage with people on the topic of lung cancer and an opportunity to raise awareness.

“I had lung cancer for two years before I actually had the ability to look beyond my own situation, and sort of struggling with how to survive my own illness…to other people with lung cancer and realize how many of us are in the same boat and how many of us never smoked,” she said.

Upon receiving an unexpected stable scan in February this year, de la Houssaye decided to take advantage of her time. The triathlete proceeded to piece together a website and social media presence, Bike Breathe Believe, where she could share the facts about lung cancer and advocate for early diagnosis and improved treatment.

“The messaging—that is the most important—is I’m just a vehicle for the bigger message: People need to wake up and understand that lung cancer is actually a risk,” de la Houssaye said.

She knew she was capable of this challenge as she has traveled across countries by bike before. She has traversed through Scotland, England, the Netherlands, Belgium, Luxembourg, Taiwan, full countries in Africa, including Zambia, Namibia and Botswana, and the island of Tasmania in Australia.

De la Houssaye is a triathlete and has participated in Ironman races with each of her five children. 

The Bike Breathe Believe team was formed along with mapped out plans and advocacy events to be held along the cross-country journey.

Not knowing what each day would mean to her health was a factor in de la Houssaye’s chosen cross-country route. She planned to take the Southern Tier route for several reasons. It offers the flattest, shortest way across the country and a pathway through Crowley, Louisiana, her hometown where she was able to visit her parents for the Easter holiday. This route starts off at Ocean Beach in San Diego, California and finishes in St. Augustine, Florida.

De la Houssaye originally planned to split the roughly 3,000-mile trek into 10 stages, planning to stop in Phoenix, El Paso, Del Rio, Austin, Houston, Crowley, New Orleans, Pensacola and Tallahassee.

The Bike Breathe Believe website worked to track and report de la Houssaye’s 41-day trek across the country, while providing crucial information on lung cancer and offering notes on mindfulness and living with cancer or caring for a cancer patient.

De la Houssaye flew out to California on March 7, and held advocacy events the next three days.

Then, on March 10, she began her ride in the rain by touching her back wheel to the Pacific Ocean in front of a cheering section of cancer patients, two of her children, friends and family.

De la Houssaye was able to continue her treatment plan while on her ride—a daily dose of osimertinib. The drugs—which cause nausea and fatigue—and her past radiation treatment created side effects throughout her journey.

“I struggled with that the whole ride because it had weakened my sternum and all the muscles that attach to that,” she said.

But de la Houssaye refused to turn negative, saying the adrenaline and other hormones naturally created while exercising helped with some pain relief.

“Getting out in the fresh air and being active was a way to get my mind off of feeling bad,” de la Houssaye said.

Not far into her journey, de la Houssaye altered her path to be much more remote, due to the global COVID-19 pandemic which had reached a critical point around mid-March.

“We just started making a decision everyday in terms of looking at the route, making sure we were able to take back roads and avoid urban areas, and making sure that we could still find a place to stay,” she said. “It was a daily decision to continue on based on the safety for me, the safety for coming into contact and potentially spreading anything to someone else.”

As a high-risk individual due to her illness, abiding by social distancing and safety recommendations were important for her health. A major part of her trip was planned advocacy events and meetings in cities all along her path. These events were canceled, as were group biker meetups along her ride.

Instead of a group of bikers, the majority of her ride included a team consisting of her husband and two support people in a trailing vehicle from Velofix, a mobile bike shop that supports rides such as this. Loading up supplies and food in bulk in the vehicle allowed for fewer stops and possible risk of exposure.

Instead of being a social ride, the trip turned into something very different—a social distancing ride, de la Houssaye joked.

The big decision-making point came for de la Houssaye and her crew around March 18, when flights were being canceled and the realization that returning home would become much more difficult.

What eased the decision was de la Houssaye’s doctors recommending that she avoid flying, coming back to New Jersey or seeking her treatment at Memorial Sloan Kettering in New York City, as she had done up until that point.

Before the pandemic, de la Houssaye would get scanned to reassess her prognosis every nine weeks in the city. Her medication was also managed in New York up until this past month due to the health risks. Scans were rescheduled by the doctors to avoid putting de la Houssaye in the high-risk environment. Her treatment is now being handled at Sloan Kettering’s New Jersey hospital locations in Basking Ridge and Middletown.
She said that if the doctors would have told her to return home she probably would have heeded their advice.

“Things were changing, evolving pretty rapidly at that time,” she said.

At certain points the group would camp out, and other times track down places they could stay that were still open and away from major cities.

De la Houssaye camped out three times before they got to Texas and campsites were officially closed to the public. They had planned to camp a lot more along their route but just as they did with everything else, they had to adjust their expectations because of the pandemic.

Arrangements were made throughout their travels to stay at hotels and homes offered to them by people who were sheltering in place elsewhere leaving their homes empty. The team even stayed at vacant wedding venues—calling ahead to see if they could use their empty space.

The Bike Breathe Believe mission was moved solely to social media outreach, with blog posts updating readers on de la Houssaye’s progress and experiences.

Soaking up the scenery on the open roads and less populated parts of the country was one of the trip’s highlights, despite the changes made due to the coronavirus.

“The biggest impact for me is just how vast and empty our country is,” de la Houssaye said. “Because when you live in an urban, highly densely populated area you don’t appreciate…Texas for instance, we biked hundreds and hundreds of miles and never came to a town. That kind of vastness is incredible. And the beauty, the natural beauty.”

De la Houssaye wanted to use her trip to connect not only with advocacy groups and those who can share her message but with patients and all people in the dire situation lung cancer has placed its victims.

“Everybody who has lungs should care about this,” she said.

The Bike Breathe Believe site remains up and running, even after de la Houssaye completed the Southern Tier route on April 21.

The next step for de la Houssaye is to continue to refine the advocacy that Bike Breathe Believe was initiated for. This broader platform is meant to continue her work in hopes of bettering the chances for future lung cancer victims.

During the course of her cross-country ride, approximately seven patients in de la Houssaye’s small lung cancer support community passed away. According to the American Cancer Society’s 2020 estimates, there will be about 135,720 deaths from lung cancer in the United States.

“There’s a huge disconnect,” she said. “There’s so much that needs to change if we’re going to try to get a handle on this disease.”

Along with her continued goal to raise awareness for lung cancer, de la Houssaye sits on the board of Princeton in Asia, a nonprofit connected to the university, as well as Give Back Yoga. She has been heavily involved with the Arts Council in Princeton and even co-owns a small business in Philadelphia, Material Culture.

The triad branding and symbolism used on the Bike Breathe Believe site were selected to project the functions of the site clearly. The Sanskrit symbol for breath is used as part of the logo, along with common yoga imagery.

The “Thrive” piece of the site delves into yoga and meditation practices, and exercise, nutrition and integrative medicine information and sources. De la Houssaye’s long commitment to full body healthy living was an aspect she wanted to highlight in her overall mission to help others.

Helping to plan the trip and manage the day-to-day logistics was de la Houssaye’s husband, David Crane. Husband, master ride planner, logistics coordinator and part-time biker and driver—Crane supported all aspects of the journey.

De la Houssaye’s cross-country ride was kept socially distant amid the COVID-19 pandemic, leaving her husband, David Crane, as her riding partner for most of the ride.

Both Crane and de la Houssaye are graduates of Princeton University, although that is not where they met, as they were five years apart, graduating in ’81 and ’86 respectively.

They were introduced to each other when they were both working at White & Case LLP in New York, when Crane was working as a lawyer and de la Houssaye was at Columbia Law School. They met in the summer of 1989 and were married in September 1991. The duo has raised five children who have all conquered worldly, physical feats through encouragement from their parents.

Part of their parenting philosophy includes suggesting each of their kids take a gap year between high school and college to try something challenging for a positive cause.

Their oldest son Cason, 27, climbed the Seven Summits to raise awareness for LGBTQ suicide issues for The Trevor Project. The second son David, 25, biked from northern to southern Africa, more than 7,000 miles, for Conservation International. Their daughter Bella, 23, hiked the Pacific Crest Trail for refugees. Their third son Oliver, 21, rode solo across the Atlantic Ocean for HomeFront and Oceana.

Their youngest son Christopher, 18, attends The Lawrenceville School and has yet to decide on his gap year adventure.

On several of their kids’ trips, Crane and de la Houssaye would try to join for parts of their journey. De la Houssaye and her achievements with her children have been captured in articles since her diagnosis, including by the New York Times, Times Insider and even a portion of her bike ride in international news agency AFP.

De la Houssaye has participated in an Ironman with all of her children at one point—the last one being with her youngest son in November 2019 in Arizona, when he turned 18.

The age to participate in an Ironman race is 18, so when Christopher had his birthday in October and officially became eligible, he and his mother took on the challenge.

“From a young age, way before I got sick way before any of this, I have tried to do things with them that required discipline, determination and sort of sticking to it,” she said.

Having just gone through radiation treatment in September, this Ironman proved difficult for de la Houssaye. The radiation to her sternum made the 2.4-mile swim portion of the race troublesome, since the treatment had weakened her upper body muscles and created fatigue. Triathletes are given just about 17 hours to complete the race, and de la Houssaye said she came in close to it, finishing in 16 hours and 40 minutes.

“It was a very, very hard race for me to do but I was worried if I didn’t try to do it then that I wouldn’t be able to do it if I waited,” de la Houssaye said.

The family has another Ironman scheduled for this summer, barring any cancellations due to COVID-19.

Learning through experience, teaching perseverance and how to get comfortable with discomfort were all critical lessons de la Houssaye wanted to teach her children.

This ideology was something de la Houssaye certainly carried with her through her cross-country ride and even afterwards.

Faced with the dangers of air travel amid the COVID-19 pandemic, de la Houssaye decided to turn her bike north.

Starting on April 25, she biked from Florida to Washington, D.C., arriving May 2, to get as close as possible to her home state, while staying in safe distance from populated areas. She was then picked up by car and taken home to her family in Lawrenceville. Sunday, May 3 was the first time she had been home since embarking on her journey in early March.

De la Houssaye and her husband, David, rode north until they hit Washington, D.C., in early May, after already completing the cross-country ride. 

On her ride north, towards the end of this second trip, de la Houssaye began to experience pain that told her she needed to get scanned once home to find out what was going on internally.

Although the pain turned out to be caused by inflammation from her prior radiation treatment to the sternum area, de la Houssaye continues to live every day with her metastasized cancer.

De la Houssaye said that like experiencing the vast distances throughout the country, where she found beauty outside of urban areas, sometimes it takes that absence to highlight the beauty in things.

She said that the years of having lung cancer have been some of the best years of her life. Being aware of the fine line between life and death makes one appreciate every moment of living that much more.

“There isn’t just any one experience,” she said. “Every day had its own beauty to it.”

 

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