Jenna Holden: Overcoming Histiocytosis and Racing the Endeavor Team Challenge

In Adventure, Inspiration, Motivation by This Adventure Life1 Comment

Outdoor recreation and adventure sports have always been a special part of Jenna Holden’s life. She was blessed to have been able to grow up on a beautiful lake in upstate NY with lots of open space and fresh air. She could often be found out climbing trees, riding bikes or out on the water swimming and wakeboarding. As she grew up she continued to enjoy many aspects of recreation and pursued a degree and career in the field. After obtaining a BS in Therapeutic Recreation she continued on to become a Certified Recreation Therapist as well as a personal trainer. In college she spent her summers in Colorado with CRU’s Lifelines outdoor recreation program and working at the Adaptive Sports Center in Crested Butte. Those summers were full of both participating and leading activities such as single track mountain biking, rock climbing, backpacking and whitewater rafting.

In 2012 her fun and active life got flipped upside down. She was diagnosed with Langerhans Cell Histiocytosis after undergoing neurosurgery to remove a tumor in her skull caused by the disease. LCH is a rare disorder that occurs when the body accumulates too many Langerhans cells, a subset of the larger family of cells known as histiocytes, which are a type of white blood cell that helps fight infection. While Langerhans cells are found in normal, healthy people, inn LCH there is an over-production and build-up of these cells which can form tumors and cause organ damage.

Since her initial diagnosis she has had three more recurrences, including another skull lesion, a tumor on the pituitary stalk resulting in diabetes insipidus and a bone lesion on her scapula. In addition to the neurosurgery, treatments have included 10 months of chemotherapy infusions and 8 Cyberknife radiation treatments. She has been blessed with good health this past year. She had a follow up MRI and CT-PET scans in May which showed great results, no new malignancy and the tumors that are there are stable – no regrowth!

Her once fun, adventurous summers were traded for neurosurgery recovery and afternoon workouts were traded for nauseating and fatiguing chemo infusions at the cancer center. She began using techniques she had learned as a recreation therapist to help keep positive, healthy and active through treatment and recovery. She would remind herself: “how am I supposed to help others conquer the mountains in their lives if I can’t do it for myself?”

Throughout her journey she has pushed herself to maintain a healthy active lifestyle throughout this season of life and has been fortunate enough to still compete in various endurance races triathlons, obstacle course races. She realizes how fortunate she is to have her health be able to compete. Not all patients with her diagnosis can say that.

She says: “Life isn’t always easy and fun, sometimes it hurts and you have to do things you really don’t want to do. I want to be encourage to others and remind you that you can always do more than you think you can.  Life is beautiful and you have a choice to either let difficulties pull you down, or rise to the occasion, be extremely grateful for your blessings, put a smile on your face, dig down deep and push through it.”

September is Histiocytosis AwarenessM. She is currently raising funds for the Histiocytosis Association by participating in the Endeavor Team Challenge.  This is a 30+ hour, 40+mile, multi-discipline adventure race in Bear Valley, CA. What better way to celebrate her first full year in remission from Langerhans Cell Histiocytosis (LCH) than to train for an adventure challenge, raise funds and fight for those battling the disease! She is thankful to be healthy enough to train, and realizes this is sadly not the case for others affected by this disease.

Join Jenna in celebrating her journey and health by donating to the Histiocytosis Association in support of my participation in the Endeavor Team Challenge. 100% of all proceeds raised will do directly to the Histiocytosis Association a 501 (c) (3) organization. Click HERE for the link!

Read on to learn about her journey and how she wants to inspire people who are overcoming obstacles to pursue their goals and adventures.

You recently celebrated 17 months with no Histiocytosis recurrences or treatments. How has this whole journey changed your life, and made you stronger?

I think the biggest takeaway from this process is the shift in perspective of how I see myself and my circumstances. I see from a higher perspective, the bigger picture of what is important in life. This journey has made me stronger spiritually. It has tested and strengthened my relationship with God who has given me fortitude. This journey has required me to live out and practice things I had previously only heard of or known in my head but not yet my heart. Like how trials help us develop endurance and endurance develops strengths of character and this develops confidence and hope. It’s through struggle that you are refined and through difficult trials that we are tested and learn to endure. This is not something you can buy, its only gained through experience. Through my journey from diagnosis through recovery I have been been able to experience this and have come out a more resilient, higher caliber individual with an enlarged capacity to be able to deal with challenges and adversity.

What inspired you to do the Endeavor Team Challenge?

This race was appealing for many reasons. I’ll narrow it to the top three.

First, as simple as it sounds, I knew it would be a fun race to train for. Who doesn’t want an excuse to get out into the wilderness an spend time pursuing adventure activities! Endeavor incorporates a variety of activities that I really enjoy such as hiking, orienteering, rock climbing, open water swimming and kayaking. These are all activities that I had a background in, but have never experienced in the context of an organized event.

Secondly, I like that this event has elements of surprise and discovery lurking around every bend. While I enjoy and respect the sports of triathlon and obstacle course races for their own reasons, the adventurer in me is not satisfied with scripted choreographed routes. I really like that Endeavor is a little ambiguous, unpredictable and will no doubt demand some on the spot survival skills and troubleshooting. There is something exciting about not knowing the exact specifications of every component included in this event. We will have to adapt, flex and take on whatever curve balls they throw at us in order to complete the challenge….that’s life isn’t it!?

Lastly, it is a way for me to celebrate recovery. I did not survive neurosurgery, chemotherapy and radiation to sit around and be comfortable. I will be the first to admit that a medical diagnosis is super easy to use an an excuse, but I don’t want to live a life defined by my diagnosis. There is so much more to me than that! It is a way for me to focus on what I can do instead of what has limited me.

What are some of your goals with the fundraiser and completing the challenge?

In participating in the challenge I am raise funds for the Histiocytosis Association, the organization that raises awareness and funds research for my disease. They are trailblazers on the route to finding better treatments and a cure for histiocytic disorders. I figured, what better way to celebrate my first full year in remission from Langerhans Cell Histiocytosis (LCH) than to train for an adventure challenge and fight for those battling the disease!

I am thankful to be healthy enough to train, and realize this is sadly not the case for others affected by this disease. Histiocytic disorders are considered “orphan diseases”.  (affects fewer than 1 in 200,000 individuals in the United States). These disorders do not receive a high priority for government-funded research. The Association relies on contributions from corporations, foundations, and individual donors to fund critical research, build awareness and conduct community outreach initiatives. Conveniently this race also falls in September which is Histiocytosis awareness month.

How have you been training for the challenge, mentally and physically?

I have been fortunate enough to be part of a fantastic triathlon team that has offered really great training opportunities has helped me to establish a solid fitness base. I have continued to train with the team on a weekly basis through long bike rides and running workouts. This training has been critical for building endurance. Longer weekend training trips have incorporated altitude and open water training as well. To this, I have added skill training specific to the event such as an orienteering class, learning to construct a poncho raft, rope climbing and brushing up on rock climbing knots and skills etc. My Endeavor Team partner Kristen, and I went up to Bear Valley a couple weekends ago for our simulation of the event. It was beneficial to get a lay of the land and become familiar with how hiking with our packs and rock climbing at that elevation will feel.

I have also been seeking out the advice of those who I really respect in the areas of endurance sports, adventure racing. Kristen gifted me the book “Deep Survival” by Laurence Gonzales when we began our training for Endeavor. I have found this entertaining, inspiring and useful for mental preparation.

How do you hope to inspire others by completing this challenge?

By completing this challenge, I hope to be a light to others dealing their own challenges, be it a medical diagnosis or otherwise. I hope others can learn to see their setbacks as an opportunity to grow in an area that they can later use as a tool. Focus on something you are good at and avoid using these setbacks as a crutch. It’s so easy to do and I will be the first to admit that I have used diagnosis as an excuse. Your mountain wont look like mine. Each person has their own unique challenges. Things that are easy for one person may be a struggle at all for others.

Also, something I have learned is that getting though a challenge isn’t just about becoming the ‘ideal self’ person you think you have to be to conquer the challenge you are facing; instead its more so about discovering, acknowledging, and cultivating the strengths you already have inside of you. I would encourage others to investigate what tools they may already possess to help them conquer their mountain.

What is your advice to anyone going through hardships in their life?

Help someone who has it worse than you, count your blessings and be thankful for the positive things you do have. I know these sound cliche, but it’s almost impossible to throw yourself a pity party when you are doing these things. I experienced a low point while I was going through chemotherapy infusions where I grew bitter about my situation. I began to hate having to get myself to all these time consuming painful appointments that left me fatigued and nauseous. I hated that I had to spend my free time cancer center instead of out living a dream.

It was during this time that I decided to sponsor a child through Compassion International.  Scrolling through pages of children who needed sponsorship I finally settled on a boy from Guatemala who had his head wrapped in a bandage, It reminded me of the one I had myself after neurosurgery. Providing for someone else in need was a great way to take my attention off petty needs of my own.

Every time I would start to feel bad for myself regarding my diagnosis or treatment I would think to my sponsor child. How could I feel bad for myself when I think of all the privileges and blessings I have. I was so fortunate to have access to great healthcare, he didn’t even have vitamins or clean water. If I ever started to get mopey I would take a minute to write my sponsor child a little letter of encouragement to let him know I was thinking of him. It worked wonders for both of us.

Lastly, how you view yourself and your situation is in turn is how it will affect you. Seeing yourself through the lens of your hardship wont get you anywhere. You have to find the correct lens to see yourself through. Remind yourself of the positive things you know to be true. Keeping your chin up and a positive perspective will go a long way. What you think and believe can change what you are capable of. I often practiced positive self talk and had an internal dialog of mantras I would remind myself of “you are stronger than this, you are doing a great job, almost there”.  You can always do more than you realize.

After you crush this race, what are some of your short-term and long-term goals?

I am actually not sure I will be crushing it! Haha, but I am so glad you have so much confidence in me Kirsten! May sound crazy but I actually chose this event because I do not know if I will be physically able to complete it. About 7 months ago when debating registering for this event, I had the realization that I have never signed up for a race/event that didn’t think I would be able to complete. As I reflect back over past triathlons, obstacle races, running races and other endurance events, in most cases I knew i would finish. I may not have known how fast, or in what condition, but in general I knew that even if I had to walk to the finish I would be able to complete. This event is so unique in its challenge that I can’t know for sure how it will end.

While the notion of 40+miles at elevation complete with strength components, obstacles, mental challenges and adventure components may seem like a fun way to spend the weekend to some.  And 30+hour adventure may seem like child’s play to some of the adventures who pursue multiple day expeditions. For me, this is the longest endurance event I have entered, and will take every ounce of strength I have to complete. I will be redefining my own limits which is my goal!

I would say its a goal of mine to pursue more diverse adventure racing in the future. This is my first and I have enjoyed training for it. I think signing up for another adventure race will keep life interesting. I would also like to learn more about the sport of orienteering racing.

How have these races and challenges helped you in your recovery? 

My doctors have told me numerous times that my active lifestyle going into treatment and throughout has helped to tolerate the process. I knew I couldn’t expect to be able to keep up the level of training and fitness during treatment and through recovery, but my doctors were pleased to learn how much I was still able to do. After my 3rd round of chemotherapy I participated in the wildflower Olympic distance triathlon, considered one of the toughest Olympic distance courses.

After recovering from treatment I was (and still am) followed closely with MRIs and CTs every 6 months. When something came up, I found that getting out and training with a bike ride through the mountains or a trail run is just what I needed to get my mind off the medical stuff.

Where do you currently live, and where are some of your favorite spots for adventure and outdoor fitness?

I currently live in Mountain View, CA.

Locally:

  • Hiking- Love Big basin especially the skyline to sea trail-Barry creek falls trail.
  • Open water swimming- Aquatic park in San Francisco- I love swimming backstroke by the ships and seeing the SF skyline from the water. The swim from Alcatraz is pretty amazing as well.
  • Road Bike- West Old La Honda climb and Kings mountain
  • Mountain Bike- Saratoga Gap Open Space Preserve

Outside CA:

  • Hiking- Any of the gorges and waterfalls around Ithaca, NY
  • Climbing- Jurassic Park, Estes Park, CO
  • Ice climbing- Keene valley, Adirondacks, NY
  • Mountain Biking- Snodgrass Trail Crested Butte, CO

What adventure activities do you participate in when you are not racing or training?

I grew up on a pond in upstate New York. This is where my love of outdoor recreation began. When I go home to visit my family I still love enjoying all the adventure that country living has to offer: wakeboarding, waterskiing, tubing, kayaking, tree climbing, fishing and campfires.

Here in California I have found that tending to my vegetable garden is always an adventure!

Click on her link to donate:

https://histio.donordrive.com/index.cfm?fuseaction=donorDrive.personalCampaignDonations&participantID=3851

 

At This Adventure Life we celebrate the lives and stories of the people who live life fearlessly. #livefearlessly

Comments

  1. You are an inspiration, Jenna. I’m so sorry for all that you’ve been through, but so thankful for how close you’ve grown to God. Keep up the amazing challenges you love. So very proud of you! Mary Johnson (Apalachin, NY)

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