True North Treks
A Fresh Chapter
Survive and Thrive
First Descents 2
In June 2018, at 38 years old, I was diagnosed with stage IV colorectal cancer that had metastasized to my brain. I was blindsided by the news and my fears were only exacerbated by my family history— my dad died from the same disease 18 years ago. I received my diagnosis the summer before my second year of graduate school.
As a full-time graduate student and part-time graduate assistant, I didn’t have time to seek out in-person support groups with other cancer patients, let alone people my own age. So when I found out about the Base2Summit camp I jumped at the chance to meet other young adults impacted by cancer, experience a new place and have some adventure.
I was quite active prior to my diagnosis, so hiking, kayaking, zip lining, etc… really helped me get a little piece of myself back. I made new, lifelong friends that I wouldn’t have met otherwise and I came back home with an appreciation of Michigan’s crystal clear lakes (we don’t have those in Louisiana!) and a sense of community.
My name is Hannah Pohlman and I was fortunate enough to be able to attend a First Descents camp last August in Estes Park, Colorado. I did not know what to expect before I arrived, except that we would be rock climbing, because the camp gave us little information. I appreciated that so much once I was there, because it allowed me to experience everything with no prior expectations.
To say this week long trip was life changing would be an understatement. I gained a family while I was there, and I learned so much about myself. Our camp was a rock climbing camp, which in itself was such an amazing thing to accomplish. Many of us had no prior experience with rock climbing, but that didn’t matter. The Colorado Climbing School guided us, and became part of our family as well.
My favorite part of camp was definitely the nightly bonfires. They were a surprise on the itinerary, but that is where I really got to learn so much about my fellow campers and myself. My view on life has forever been changed by the mountains, positivity, and love that I experienced for a full week with no outside life interruptions.
The advice that I would give to someone who is nervous, is to just go! I was nervous too, but feeling like you belong again, and that there are people out there who understand how you see the world is such a gift, something that I will forever be grateful for. I know now that I am not alone in my post-cancer life, and that brings me so much happiness.
The path I had set out for my life was disrupted in 2015 when I was diagnosed with ovarian cancer at 26. I was fortunate to have a relatively short treatment period but I was left reeling all the same once I was done with chemo. It didn’t feel right to pursue the exact same goals and dreams that I had once wanted, yet I didn’t have a clear sense of what the “new me” wanted either.
In June 2018, my oncologist recommended me for a spot on a True North Treks trip to the Wind River Range and I felt a little spark of curiosity. It wasn’t something I would normally have picked for myself, but the promise of meeting fellow survivors and challenging myself in a beautiful environment made me want to give it a shot anyway. The Cassie Hines Shoes Cancer Foundation supported my trip and made it possible for me to attend as the trip was just over a month away from when I first decided to go!
For one week I pushed myself physically, accomplishing more than what I thought I would be capable of as I hiked in the mountains with a heavy pack. Yoga in the mornings helped prepare us for each day and clear our minds. But more than the physical challenge, I had a chance to make deep connections in guided discussions each night with a group of women who understood me. I felt supported and loved and hope that I was able to support them, too.
In the last year since the trip I’ve taken better care of myself: slowing down, taking time off, spending more time connecting with friends and family, and even challenging myself in new ways— like running a 10k and taking a solo trip to a national park! I can trace the motivation behind these decisions and my commitment to them to my True North Treks trip. I hope that any young adult cancer survivor that is interested in an experience like TNT or a camp makes the brave decision to go for it and discover new things about themselves in the process.
I was so excited to have the opportunity to attend Epic Experience in Colorado in February 2019. However, after having surgery in March 2018 followed by a knee injury in May 2018, the medical bills began rolling in and I realized that I would not be able to pay for the airfare to get to Colorado for camp. I’m so grateful to the Cassie Hines Shoes Cancer Foundation which made it possible for me to attend and took care of my airfare.
As I prepared for camp, I emailed Nancy Ferro aka Mama Lou with millions of questions about what I needed to pack, what to wear, what to bring and what things we’d be doing. I’d never been to Colorado in the winter and I’d never participated in winter sports before, aside from the one time I went downhill skiing in college 20 years ago and the years I went sledding as a kid. From the very beginning Mama Lou was very patient in answering all my questions and making me feel at ease. I expected a weeklong outdoor adventure with Epic Experience, but I never imagined the amazing friendships that would come out of it. I’ve attended “cancer camps” before and had great adventures but did not really develop close friendships out of them. In our small groups at Epic we discussed our fears, hopes and many other topics throughout the week. It was a safe place to discuss how you were feeling, if you so desired, and if you did not want to talk, that was also ok. We were all in different places in our life with cancer and we recognized the significance of that. And it truly brought us all together.
And let me tell you, this camp wasn’t just all about feelings and talking, lest you are concerned that this camp isn’t for you! We shared lots of laughter as well in all our adventures that week. I was nervous to try snowshoeing and cross-country skiing – more likely I was afraid to fail. But understand this: you are not alone in your week at Epic Experience (unless of course you’d like a few minutes to yourself, which is ok, too!) When you fall, your new cancer camp friends will be there to help you up – or at least laugh with you as they try to help you up and end up falling down themselves. You may have gone into your Epic Experience feeling alone or like you have no support, but I can guarantee you won’t go home feeling the same way!
If you have the opportunity to attend Epic Experience, I urge you to do it. You will not regret it! So grateful for this experience and for CHSCF for making it possible!
In May of 2019, I attended Camp 39 of Camp Koru located in Maui, Hawaii.
At camp we not only got to spend four glorious mornings surfing but we also ventured to nearby towns, helped restore dunes, and bonded over a “bonfire” with 20 strangers that I now call my Ohana.
Going into camp, I knew there would be a lot of surfing and sitting around sharing our emotions and experiences. These were the two things that I was nervous about. I had my reservations about opening up to anyone. To my surprise, I ended up wanting to share at each and every “bonfire” because it felt so refreshing to connect with people who knew and could relate to what I had endured. Each and every person has their own unique experience with something that bonds us all together and it is so inspiring to be surrounded by the kindest, strongest, and caring people. My other concern was about whether or not I was physically able to surf. Due to treatments, my capabilities had gone through a lot of changes. I allowed myself to let go of those worries and challenged myself. It was also very comforting knowing the instructors not only allow you to surf at your own pace but support and encourage it. Every single person was impressed at their abilities, and I think you will be too.
My favorite part of this camp experience was watching everyone’s faces out in the water while they were surfing. All the campers had their own different goals and you could actually see everyones faces light up as they overcame the things that they allowed to hold them back. Watching people conquer their fears was so enlightening. I absolutely encourage anyone thinking of going on this adventure to do it. Allow yourself to step out of your comfort zone and embrace this amazing adventure.
I am beyond grateful to have had the chance to experience something that was not only fun but spiritually healing.
I went to Project Koru camp in Maui, HI on May 18, 2019 for a week. We all learned how to surf while we were there. In the beginning, I had a really hard time getting in the water because my nerves were a mess on the first day. I was thinking of all the things that could possibly happen while out there, biggest concern was my “bad leg” and getting seriously injured. On the second day, with the help of some amazing camp staff and campers, I was able to work my way into the water.
While with Project Koru, not only did we surf, but we also gave back to the island by working with Maui’s wildlife reservation. That had to be my favorite day because I felt completely in my element and knowing that I was not only on this island to have fun but to give back was awesome!
Before going to camp, I can’t say that there’s anything that I expected at all, this was a whole new experience that I had a difficult time imagining myself in to begin with. After camp though, I can honestly say my experience went above what I expected at all. I didn’t expect to meet people that not only shared my rare kind of cancer but also didn’t expect to make the family that I did. We all shared such personal stories and experiences and helped each other along the journey. My favorite thing that happened that defined our family was how no one left anyone behind when we were learning how to surf.
To anyone that’s nervous about attending camp: you have every right to be nervous, but just know that the people you will meet and the experience will outweigh any fear you may have. You’ve been through so much in your young life and this camp is the place to put your strength and courage on display!
My name is Jim Myers and I am so grateful for the opportunity provided to me by the Cassie Hines Shoes Cancer Foundation. I am 27 years old and have had two operations, radiation and chemotherapy to treat brain cancer. I was selected to participate in the “Epic Experience” camp in Denver, CO but I did not have the financial means to travel there. I reached out to CHSCF and received a travel scholarship to attend the camp; it changed my life.
I had never participated in any sort of “cancer camp” or even a support group because not that many 27-year olds have brain cancer. However, when I arrived at camp, I found what I had been looking for. I was surrounded by adults and young adults who were battling the same frustrations and fears as myself. We quickly bonded, shared our stories and began healing and laughing about what we have in common. I was so nervous to attend, and even more nervous to participate and be vulnerable in front of people I had never met. I am so grateful that I had this experience and pushed myself to share my story and begin the healing that I have needed.
Truly, I had no expectations of what my camp was going to be like. I knew it was going to be “EPIC” so I was ready to participate in any activities they had for us. I was amazed by my fellow campers throughout the week. It was incredible to see so many people, who have battled through so much, turn their attention to fun activities and forget about their current struggles. I am supposed to keep my favorite part a secret; but I really enjoyed snowshoeing on top of a mountain as the sun set. My attitude on life was changed by my time at Epic Experience. I was able to share my challenges and relate to the struggles of other young adults my age. My roommate, Adam, was the first young male with cancer I had ever met.
My journey through life and cancer has been difficult just like everyone else’s. I have been told so many times to find support groups or get out and travel. Unfortunately, I had no local options and no financial means to “go explore.” My favorite part of the camp was sharing my journey, listening to others and leaving with a legitimate support system and network. This was my first ever “camp” or experience with a cancer organization. I will be forever grateful to Epic Experience and Cassie Hines Shoes Cancer Foundation.
My advice to anyone thinking about trying a camp or new experience: “do it.” I was nervous too; I flew by myself and arrived a stranger. I left with 11 close friends and people who understood who I am at a deeper level than most people in my life. This trip was funny, challenging, awakening and much needed. Thanks again to everyone who helped me go and I hope that someone else gets this opportunity in the future.
I attended Camp Koru 39 on Maui, Hawaii from May 12th to May 18th.
The largest portion of what I did was learn to surf which covered 4 out of the full 5 days of the camp. In addition to surfing, there was points where we all participated in sight seeing, exploring the local towns, and I even exercised in the forms of cross fit style training, and yoga!
One of the best moments was planting new growth at a local sanctuary. I expected there to be the surfing and scheduled events, but what I did not expect is to make deep, meaningful connections like I did. I was also unaware of how mentally cleansing the campfire discussions would be. There were moments of sadness, laughter, and true emotion.
Every day, Camp Koru 39 exceeded my expectations. My personal favorite part was surfing and getting meaningful tattoos with a group of others. A small group of us even got small, matching tattoos in addition to the tattoos we came for.
The best advice I can give is to open up as best as you can, to take in the experiences with a positive perspective, and to really enjoy the time with the others. Absolutely everyone had an amazing personality with different stories to tell.
What camp did you go to? Where? When?
EPIC Experience in Colorado. July 15 – July 21.
What did you do while you were there?
Activities included horseback riding, kayaking, white water rafting, light hiking, and relaxed in the hot tub. While I was there, I also bonded with other like-minded individuals that shared similar experiences with cancer. Can’t forget the delicious home cooked meals that I ate.
What did you expect before going to camp?
I had never been on any kind of cancer retreats, so I didn’t expect anything before going to camp. They also didn’t give us much information on what to expect, so I was hesitant to go, but so glad that I did!
Did your impression of camp change after you attended? If so, what changed?
I don’t ever go camping so this experience definitely changed my impression of camp.
What was your favorite part?
I really enjoyed all the activities because those were all my first time.
What advice would you give to someone who is nervous to attend or unaware of camps like these?
Just go for it! It was such an awesome and very unique experience. Just being there and living in the moment helped me to think more positively about my cancer diagnosis.
This was my second year at Camp Mak-A-Dream in Goldcreek, Montana and I obviously went back for a reason. Camp Mak-A-Dream is a special week where I can just cope with others that understand how I feel.
At Camp Mak-A-Dream it is so busy and there is always something to do at all times and that is what I love about it. I participated in activities like the climbing wall, riding horses, making art (like Tie-dye), playing many enjoyable games, bowling (outside of camp), and having chats with my cabin was one of my favorite things.
This year I pretty much expected most of the same things as last year, however I did expect to see lots of my old friends that I met from the previous year.
My impression of camp definitely changed me. It changed me mentally mostly because leaving camp I left with a sort of closure knowing that I am not alone with anything I’ve went through and that there are people who understand and have felt my pain.
There was so many favorite parts, but what stood out to me this year at camp was the cabin chats where we could hear various survival stories, and help each other with advice. I also loved the bowling.
I was actually very nervous to come to camp the first year. I was nervous to go somewhere without family, thinking I’d have no friends and wouldn’t fit in somehow. Why did I think this? I have no clue! Everyone at camp has a huge similarity, and that similarity brings everyone together in a way I can’t explain. Everyone is so friendly and before you know it, you’re friends with almost the whole camp.
Camp Mak-A-Dream is definitely an experience like no other. I will be attending this camp until I’m 18 and can’t attend anymore as a camper and maybe then I’ll even become a volunteer!
Thanks to the generosity and flexibility of the Cassie Hines Shoes Cancer Foundation, I was afforded the unique opportunity to participate in Project Koru’s Camp Koru in Maui, HI in April 2018. This is actually my second cancer retreat experience with Project Koru as I was a camper for its “This Is Life” program in Sausalito, CA (just north of San Francisco, CA). Furthermore, I also had the distinct privilege to attend Stupid Cancer’s CancerCon in Denver, CO just before my trip to Hawaii.
Project Koru offer both a ski and snowboarding camp as well as a surf and paddle boarding camp. Given that my location was in Hawaii, I obviously participated in the surf camp.
Camp Olowalu in Lahaina, HI was our home base for our week in Hawaii. It was a waterfront campground in which we were housed in cozy cabins for the duration of the trip. In fact, on some nights, a few camps decided to sleep under the stars next to the beach, weather permitting.
Throughout the camp, we had the opportunity to surf, paddleboard, snorkel and swim at the beach in Kihei, HI. Some of us who were more daring decided to engage in some tandem surfing (i.e. two people on one board catching a wave). We were all were instructed on the best practice on how to surf and paddleboard by the fabulous instructors at Maui Waveriders in Kihei. Also, they had three of their instructors with us in the water to help us catch waves, share insights on island life and life general, as well as keep an eye out for us.
But, our experience went beyond merely enjoying the beach. We also had the chance to volunteer a nature preserve, Kealia Pond National Wildlife Refuge, to be exact. The purpose of this refuge is to provide a safe natural habitat for the native plants and animals (principally birds and reptiles). We were tasked to remove the invasive pickleweed plants from a section of the habitat in order to protect the native plants. Before we went to the Wildlife Refuge, we saw the Maui Fishpond which was slowly being restored to its former glory. Keep in mind that the native Hawaiians didn’t have refrigeration so they would create these fish ponds to raise fish to as to have a stable food supply.
Our stay included a few trips to a some nearby cities on the island like Lahaina, where we all took a group photo in front Maui’s oldest living banyan tree at the Lahaina Banyan Court. In addition, we also made a quick trip to the quaint town of Paia, HI which includes the Maui Dharma Center. One day, we enjoyed a picnic lunch at Baldwin Beach Park. Baby Beach provided some of the most calm, shallow waters while offering the best opportunity to get up and personal with some sea turtles (be careful not to touch them! If you get caught, it’s a $500 fine!). I can’t forget the awe inspiring Lava Fields at La Perouse Bay.
I would be remiss if I didn’t mention, Ahi (his camp power name), the camp chef. He was quite masterful in providing delicious, satisfying as well as nutritious meals (which artfully featuring the local fruits, produce and seafood into his cuisine) for us three times a day, every day of the trip.
Though not an official part of the trip, but highly recommended by the camp counselors, going to Leoda’s Kitchen and Pie Shop which was a merely 11 minute walk from the campground. The chocolate macadamia and the banana cream pies were the undisputed favorites!
The essential part of experiences like this is to surround yourself with others who understand and can empathize with your struggle and be a source of mutual support. In your hometown, your doctor’s office, clinic, etc., it’s hard for us to remove the tough exterior that we must develop in order to braving face the challenges of life with cancer. However, a cancer camp experience is about stripping away that tough mask and becoming vulnerable with others and learning to grow.
I had several favorite parts of my Camp Koru experience:
Picking our camp “power names.” I’m William, but most call Will. Yet those closest to me refer to me as “Thrill.” However, the rule about picking power names it couldn’t be anything that you have been called before. I gave some of the campers at the airport the choice between three names. The first two were Marvel-inspired, “Black Panther” and “T’Challa.” Those options were panned. And they selected the third which was inspired by the Adult Swim cartoon, Rick & Morty, “Pickle Rick!” So, my Camp Koru power name was Pickle Rick which always lead to chuckle within the group. Others just called me Pickle for short.
We had a nightly tradition of awarding the Koru Spirit Chain to a camper who showed true grit and determination throughout the day. This award is granted by the previous spirit chain recipient. Cyan (her camp power) was talking about how this person deserved the spirit award for their character and personality and whatnot. I, for my part, wasn’t really paying attention because I had reasoned that the person described had no chance to be me. So, I was quite surprised and humbled when I finally turned around and Cyan was standing right in front of me with the spirit chain.
On Friday evening, our last night on the island, we had our Project Koru ceremony in which we all were accepted into the Project Koru O’hana (family) and were given symbols of our transformation of the experience with a specialized necklace with a carved charmed of the Project Koru symbol.
After our camp officially ended on Saturday morning, I kinda fell into the Morgan Freeman role in Driving Miss Daisy by offering rides to my fellow campers whose rental cars reservations had fallen through. That lead to a day of driving across to the island to Lahaina for brunch, a stop by a ukulele store, a tattoo parlor, a roadside stop for Hawaiian Huli Huli Chicken and Pork, a Hawaiian organic farm and distillery, and what trip to Hawaii would be complete without a mandatory Costco run for Hawaiian snacks and candy for the long plane ride home!
My advice to anyone that is either reluctant or nervous about this camp is to embrace the fear! There are a lot of unknowns: who you will be in camp with, who your counselors will be, the weather, the activities, etc. However, understand your fear, but don’t let it hold you back! It’s okay to be reluctant or nervous, yet it is almost unforgivable for you to allow that to dictate your actions. Naturally, we were all afraid when we were diagnosed with cancer. We were fearful….nonetheless, we didn’t allow that fear to weaken our resolve to fight, live and thrive. So, if we are baller enough to look cancer in eyes and laugh, how much more readily can we actively face and overcome our fears in other parts of our life. Don’t let your fear nor cancer deprive you of a rare, unique opportunity to better yourself and grow!
The Cassie Hines Shoes Foundation kindly supported me to go on on a True North survivor/caregiver trek in the Selkirk Mountains in Idaho in the summer of 2018.
The Trek was hosted at the Eureka Institute, Idaho, about an hour’s drive from Spokane in Washington State. There was a gorgeous wooden cabin with giant windows looking out at trees and mountains in the distance, deer grazing on grass and a little home vegetable garden. TNT hosted five cancer survivor/caregiver ‘pairs’, all in our 20s and 30s, and we spent three days relaxing, going for hikes in the Selkirk Mountains, camping under the stars, kayaking and eating delicious food.
Before I went on this trip, I’d met few other young people who had dealt with the chaos of a cancer diagnosis and treatment. It meant a lot to be able to connect with other people who had been through a similar experience, and was refreshing to be able to openly talk about treatment and the challenges of going back to our daily lives. I also appreciated being able to ask about how other people had transitioned back to work and university after treatment.
This trip was also extra special in that each person brought someone who had been a caregiver during their cancer experience. I brought my little sister, who flew from Australia to join me for the four days. When I was diagnosed with cancer it wasn’t just my life that got turned upside down; and I felt like going on this trek together was a way to take time to acknowledge how much my cancer diagnosis and treatment had affected not just me but her too.
I’d recommend a similar trip to anyone who’s interested – I’m so thankful to have been able to go on this trip.
I went to Camp Koru’s surf camp in Maui, Hawaii in November 2017 and it was amazing!
I learned how to surf in the beautiful waters of Hawaii. It was an opportunity of a lifetime and The Cassie Hines Shoes Cancer Foundation helped make that possible. I had never been to Hawaii but always wanted to go.
To be able to share this trip with other young cancer survivors was a phenomenal experience. We got to camp out in cabins right on the sand. We would load up in the vans and go surfing or paddle boarding in the morning and then come back to camp for a delicious meal cooked by the infamous Chef Ahi! I would spend my afternoons hanging out with my camp mates and scuba diving. We swam with turtles and one morning when I was paddle boarding I even saw a giant manta ray. It truly was an amazing trip. I got to play around at the lava-covered beaches and even do some yoga on my stand up paddle board.
I honestly had no expectations before going to camp and didn’t really know what I was going to get to experience besides surfing. Camp Koru exceeded any expectations I could have set. The staff was sensational, the food was delicious, and the experience was life-changing. At night we would have campfires where we would talk about issues that affect young cancer survivors. Our conversations were filled with laughter and also tears. It was a very healing experience for me. My favorite part of camp was floating on the paddle board and being completely at peace. I was able to feel so much gratitude for being gifted this opportunity and for battling cancer and just being alive. My week spent in Hawaii was a profound experience that I am so grateful for.
The advice I would give someone who is nervous to attend is just go for it! Seriously, you have faced cancer…now go out and live your life. This camp and the staff are wonderful. Oh and the outdoor showers under the starts aren’t too bad either!
Hi, I’m Jackie. Well, my new friends call me Four, and that is because I am a young adult four-time cancer survivor. Last month (April 2017), I was invited to attend Camp Koru (Snow Camp) with Athletes for Cancer. I feel so lucky because all of my expenses were covered so that I could participate in snowboarding at Mount Hood in Oregon! What an adventure this was! Being from Georgia, I don’t frequently get to enjoy snow, so you can imagine how exciting this was for me. I felt like I was in a winter wonderland. Ten more young adult survivors were also invited and stayed at a beautiful lodge overlooking Hood River and with a breathtaking view of Mount Hood (6,000 feet high) for one week.
A4C’s Camp Koru is an adventure camp for cancer survivors aimed at strengthening community while exposing us to challenging activities. While I was at Camp Koru, I learned how to snowboard from some of the best instructors in the business (☺) at one of the nicest ski resorts I have ever seen. Also, our group leaders Nalu and Bear (also A4C Founders) made sure we were well fed by phenomenal chefs, had so many treats and goodies to keep as souvenirs, and more importantly, lifetime memories to remember and share. Our nightly campfire sessions offered a safe space to chat, learn, and connect—a luxury rarely afforded to young adult cancer survivors because of our primary focus on healthcare and treatment.
I hoped that in attending Athletes for Cancer that I would gain experience with snowboarding for the first time, which I did and so much more. Each of us were exposed to the thrill of boarding or skiing, most of us for the first time. We also learned about one another and discovered that there are many things that we do have in common with other young adult survivors. It is just somewhat difficult because we are so spread out and in our own networks, a bit isolated due to our state of health and level of care. Even when we are surrounded by people who care for and about us, dealing with cancer can be a very lonely experience. Though I attended thinking that I would meet some cool people and have some fun times doing something new in a strange place, I left believing that I had made friends for life that could understand and even relate to my experiences as a young adult. It was such a liberating feeling. And I will say that my favorite part of camp was experiencing budding friendships while making unexpected connections with people I might otherwise have never met.
If I were to try to finance such an adventure on my own, I don’t think I would have been able to go snowboarding or attend anything like Camp Koru. Because of the efforts of Athletes 4 Cancer, the experience became available to me. I simply completed the application and hoped for the best. When I received notification that I had been accepted, I was thrilled. But the excitement did not end there. I learned about the Cassie Hines Shoes Cancer Foundation (CHSCF), an organization that believes in helping survivors like me to get to programs like Camp Koru. With my permission, CHSCF used the application information provided by A4C to verify my need for additional support to make it to Oregon! That’s right, they provided transportation for me from Georgia, in response to my simple request. So if I had doubts or worries, they were assuaged by CHSCF. THEN, to really brighten my day, I received the BEST care package EVER from the foundation; what an awesome blessing it has been to benefit from such opportunities. I continue to share the work that organizations do to tangibly benefit young adult cancer survivors, because we go through so much to keep pressing forward. Camp Koru helped me to recognize my abilities to accomplish more than I dreamed. Everyone has their journey, and I am so glad that I have had great partners along the way. Thank you CHSCF!!
The past two year were some of the most challenging times I have ever faced in my young age. At 24 years old just entering the “real” world. A term I hate so much, but a term we all understand. I had just graduated college and was ready to start my big kid job. I was on my way to becoming a California Highway Patrol officer, when my life slammed on the brakes. Let’s be honest, it felt like the e-brake was being pulled while I was going 80mph.
Two years of prior doctor appointments and emergency room visits all started to make sense. I was diagnosed with a primitive neuroectodermal tumor, Ewings Sarcoma. An 8lb tumor was playing Pac Man on my rib cage. Stanford Medical Center recommended Dr. Mark Berry to perform an extensive thoracic surgery to remove the mass. The surgery was successful, so successful that I thought I was cancer free. During my follow up appointment, less than two weeks after surgery, I was told that I would be starting an aggressive chemotherapy plan. I spent the next year in the hospital, being blasted with chemotherapy. I was admitted in the hospital every ten days for five days and three days (rotating schedule). I am now cancer free as on May 1, 2016 and I have scheduled PET scans every three months currently.
Having cancer has been such a gift, a gift I would return but still a gift. It’s allowed me to see life in a way that people dream of! Recently I returned from an amazing trip with A Fresh Chapter. I had the opportunity to volunteer in Cartago, Costa Rica at a day center for disabled people ages 21-64. At first I was skeptical about volunteering abroad, what could I bring to assist at this facility, would I be of any use? The facility I volunteered at was very privileged especially for where it is located. They had organized activities, materials, and staff that showed up! I really started to think, how am I going to be useful. Well, my experience exceeded any expectations I had set! The participants didn’t speak a word of English but it didn’t stop them from having eyes full of joy, and eager to pull us away to join them on a project.
Costa Rica was incredible, but words really can’t describe my experience volunteering abroad. Actively participating in the daily cultures of Costa Rica taught me innumerable life lessons. I have learned values such as the importance of self-acceptance, collectivity, and love! I am thankful for the Cassie Hines Shoes Cancer Foundation for sending me on such a life changing experience & supporting me in the opportunity given to me by A Fresh Chapter.
My name is Ian. In November 2013 I was diagnosed with T-cell Acute Lymphoblastic Leukemia. Cancer would not only stop life in it tracks, but make it seem impossible to start again. During treatment and after, moving forward seemed out of reach and at times intimidating. Some very good and understanding people asked me to join them on a cancer survivor trek. I was told this would be a great way learn how to take life back and to help me realize that I’m not alone. After three years of putting this offer on the back burner and worrying that I couldn’t do it, I decided to go for it!
I chose a backcountry camping trek in Yellowstone National Park, in September of 2017. I would be going with four fellow survivors and three guides. I wasn’t fully sure what to expect and no one could have ever told me how my experience would go. I learned so much about nature, and most importantly, about myself. I got to experience the world at its best, from camping at the base of a mountain to a riverside that is more beautiful than any picture or video; every morning seeing the sunrise over the mountain tops and at night more stars than I thought the sky could hold; learning to cast a fly rod or watching a buffalo wake up to start its day; watching an eagle soaring through a valley. Every step taken on the trail was impossible not to stop and live in the moment. The group would often refer to us going from a 60 mph life to a 2.5 mph life and it is amazing to do that. My favorite times would be sitting on a rock ledge or riverside and getting completely lost, living only in that moment.
Most importantly I got to see myself at my best. I realized how important and strong I am, and that I deserve to be here! Each day I learned new ways of connecting with myself and being positive. This was a chance to be among those who have “been there” and understand a bit of where I came from and what I’m going through. I went into this trek worrying how others see me and how they’ll hear my story and I finished proud to show them who I am.
To anyone (like me) who isn’t sure for whatever reason about making your own adventure, there are some amazing people in this world at Cassie Hines Shoes Cancer Foundation and True North Treks who will show you how. Don’t let anything stop you! Cancer doesn’t define you; let your happiness do that.
You can do it.
You deserve it.
This past May (2017) I went to Camp Koru in Maui. It was a surf camp with the company originally called Athletes 4 Cancer.
While we were there, I met the most incredible group of individuals I have EVER met. To be in a group where every single person heard the words “you have cancer” at some point in their life, immediately put me at ease. We all chatted and bonded so quickly. At camp each day, we rose early and headed to the beach to learn how to surf and occasionally paddle board. In the afternoons, our schedules varied from exploring towns on the island, relaxing afternoons at the camp with yoga, painting, and hiking.
I didn’t have too many expectations going into camp. It was a big leap for me to travel across the country (RI to HI) alone so there were a lot of nerves involved. While surfing seems like an obvious expectation, I didn’t expect to be athletic/coordinated enough to be able to surf for hours each morning. I expected a “kumbaya” type thing in the evenings, where we sat by a campfire and shared stories, maybe sang. There wasn’t much singing, but I wasn’t that far off 🙂
When people asked me about camp when I returned, I sometimes found myself at a loss for words. We did SO much, I completed much more than I ever thought I’d be physically capable of, I made these friendships that, even with just a week together, felt more like family.
Even spending such a short time together, a few of my campers in similar shoes as myself, helped to change my mindset. A mindset that I was afraid would never be able to shift at all. They opened by eyes to enjoying life and focusing on the present, and knowing that if it comes back, you will be strong enough to handle it. You can’t let the fear of the unknown damper today.
My favorite parts of camp were the evening campfires. (Ironically the thing I sort of “mocked” and imagined in my head before camp). I have never been in such a comfortable place where I could open up so freely. In our everyday world, we have to tiptoe around cancer topics, especially fears of relapse, because people only want to hear happy things. They rejoice when you’re in remission and then want to be able to put your cancer in the past. But any of us who have been through it, know it’s not over after treatment.
If you’re thinking of going to a camp, my only advice is to throw all of your excuses away and GO. It will hands down be an experience of a lifetime.
I was diagnosed with a Grade 4 Glioblastoma (GBM) brain tumor in December 2007 at the age of 28, a few weeks before Christmas. After reeling from the shock and recovery from brain surgery, I made it my mission to defy the odds (average survival after a GBM diagnosis is less than 15 months), and beat my cancer. It helped that I had an incredible support system of family, friends, my medical team and coworkers.
I attended the weeklong Green River, UT camping and canoeing trip through True North Treks. I had heard about trips like these for years, but finally decided that this was the time and the trip for me! I wanted to commemorate my upcoming 10th “cancerversary” in December, and I thought that this would be an awesome way to celebrate! I was looking to challenge myself, and having never camped or extensively canoed before, I achieved that goal! I surprised myself by enjoying the camping, canoeing, and hiking ”jaunts” as much as I did. Of course, the spectacular scenery, staff, and 9 other amazing survivors helped! We set out on the Green River near Ruby Ranch, UT for 5 days of canoeing and camping, growing and sharing. We started most days with yoga, and ended every evening with meditation around the campfire. Everyone shared stories of their lives and struggles. It was healing to be with other young adults who had similar experiences and challenges.
I am so grateful to the Cassie Hines Shoes Cancer Foundation for enabling me to attend by covering my airfare for the trek! Thank you CHSCF!!!
Survivorship is difficult. Recovery is long.
My journey began in May 2000, at age 24. I was diagnosed with a benign Hypothalamic Germinoma (pituitary tumor). I had experienced a myriad of symptoms for over a year and a half before I was finally diagnosed. I then spent 5 ½ weeks in the hospital being treated, followed by 2 ½ months of chemotherapy at two week intervals, and finished with 3 weeks of brain radiation. I was given the ‘all clear’ in December of 2000. I returned back to undergraduate school and began the process of healing.
Due to damage to my pituitary by the tumor, I had to begin a regiment of hormone replacement therapies. I am deficient in 5 different hormones, three of which cause fatigue. For over 15 years my levels stayed within ‘normal’ range (even though the fatigue would force me to sleep between 12-14 hours per 24 day), and my scans clear….
…until October, 2015 (age 39). For about a month, I had experienced numbness on the right side of my face, back behind my right ear. Once pressure had begun in my right eye, I started to believe I might have a shunt failure. I have a VP Shunt implant behind my ear from 2000. I called my neurologist to express my concerns, and I was urged to get checked out immediately, to diagnose the issue.
I live a block away from a hospital (not my primary hospital) and walked to the ER. After having an MRI and waiting for 5 hours for the results, I was told I had a ‘very large tumor’ over my right eye, and that ‘the neurosurgeon on call has seen the scan and wants to take it out. Tomorrow.’
Um…alrighty then? The neurosurgeon came to talk to me, explained what it was. He could tell from the scans alone that it was a Meningioma. Benign. It was floating in between my brain and my skull. On the scan it looked enormous, but was actually more like a thin pancake. He was confident that all he would have to do is open up my forehead and pull it out. Um….alrighty then. I was relieved. It made sense to me, so I knew I had no other choice. I said YES to the surgery.
The initial MRI was on a Thursday. The tumor was removed on Friday morning. I spent two days ‘recovering’ in a private room, and was home on Monday afternoon.
I say recovery is long. It took me 10 years before I could use ‘CANCER’ in my story. It was in 2010 when I first cried for ME (longer story). My emotional recovery had just begun, and I was finally processing what I had been through the first time around. And then I was thrown another wrench into the process. Recovery was going to take much longer.
I learned about Camp Koru through my AYA Cancer support group. I was so stoked when I was approved for the trip by my doctor. And I was even more stoked when my travel was covered by the Cassie Hines Shoes Cancer Foundation.
Going to Maui in November 2016 was….WOW! Spending time with other survivors / fighters, epic surfing, stunning vistas….WOW-OH-WOW! I was forever changed by the experience. I came home more centered, more in tune to who I was as a cancer survivor, as a member of a vast family of fighters. Despite what I may have had to endure in my life, at the end of the day, none of that matters. What matters is that I am STILL HERE. That I am LIVING LIFE. That I am CONNECTING. It’s easy to say ‘don’t sweat the small things’, but you know, it’s true. Being in the moment is all that matters to me. My experience at Camp Koru was a weeklong moment, one that I will never forget!
Remi aka PALUA KOA [‘Double Warrior’]
My name is Shannon Heika and I am 25 years old. I was diagnosed with Leukemia and received a bone marrow transplant in 2014. After my transplant I developed something called graft versus host disease that has greatly affected my everyday life. Being 25 dealing with a lot of physical limitations that most other people my age do not understand can be hard at times. When I found out about Camp Koru in Maui I knew I had to apply.
If cancer has taught me anything it’s to push yourself and never say no to an adventure because life is short. November 2016 I packed my bags and boarded a plane to Maui, somewhere I have always dreamed of going. When I arrived at Camp Koru I found myself surrounded by people that instantly felt like family. I got to surf, paddleboard, snorkel, and sight see around the island. I was nervous my physical limitations would have me feeling left out but there was not one moment I felt alone or different at camp.
The whole week I was surrounded by people who helped and encouraged me. Whether it be carrying my surfboard to the beach or sitting on a bench and taking a break while walking around town, I was always supported by my fellow campers. I met so many amazing people at camp and made a few friends that I know I will keep in touch with forever. I feel so lucky to have experienced the magic of Camp Koru, I was so sad to come home. The nightly bonfires where we got to connect on such a deep level with one another are memories I will cherish forever.
I am so glad I went to Camp Koru and I highly recommend attending a cancer camp. I left feeling the best I had since my diagnosis. I made so many amazing memories with so many beautiful people. It was definitely a life changing experience.
This summer I was honored with the opportunity to attend Epic Experience in Colorado. Little did I know, Epic would change me in more ways than one. After my treatments ended, I felt lost with no direction. Through my doctor at Duke, I discovered Epic. I knew I needed this experience to help me move forward past this tough transitional period of my life. For me, Epic was life changing in many ways.
Being able to kayak on the Colorado River everyday, go horseback riding, and enjoy the pure serene scenery surrounding you is truly breathtaking. Most importantly, you are surrounded by people who can connect with you on a level no other support system can. Although I had a great support system, I always had feelings of being lonely and disconnected. Epic transformed me.
You face challenges head on and aren’t afraid because you know if you fall out of your kayak or have hesitation, the river will keep going, just as life will keep going. Epic allowed me to grow and flourish showing me there is life beyond cancer. We all have a direction and purpose; sometimes we have to go back before we can move forward. I was heading backwards before Epic now I am heading forward with my own direction and purpose! I want to thank CHSCF from the bottom of my heart for allowing me to experience Epic. Without your kindness and generosity this would not be possible!
Arrow (Jessie Kovach)
I had wanted to go sailing on a sail boat all of my life, so when I saw that as an option with Survive and Thrive I signed up. I didn’t read the fine print, I didn’t really care, and I was going to have the chance to go sailing! But I ended up wait-listed and forgot I even signed up. Months passed (around 6 months to be exact!) when I got an email that changed my life.
The email from the lovely Bonnie Lang told me I had been wait-listed for this camp and now a spot had opened up! If I could pay the deposit and get myself to Campbell River Canada in roughly 8 weeks then I could go. My dream: sailing. Please realize I still didn’t know anything else about this trip and honestly didn’t care.
I had a few things to figure out like getting my passport (which I didn’t have, but no matter what, I was going on this trip. Ha!) I also needed a plane ticket to Campbell River which is 4 hours drive from Vancouver CA. So hours after I agreed to go, I sent in for the passport, which if everything went smoothly should only take 6 weeks max to have in my hands (plenty of time!) I decided to risk not applying for the rush passport, and then 1 week after I sent everything in they sent it all back because I hadn’t signed the forms (not my finest moment). So that exact same day it came back I filled out the paper work again payed more money (grrrr) and sent it all back express mail and said a prayer. I had my passport in my hand 2.5 weeks later, with weeks to spare.
Getting to Canada presented with a lot of options, the first was driving my car, which was quickly ruled out because we weren’t really positive it could make it that far. Flying was option B, flying to Vancouver is not very expensive from Portland (where I flew out from) but flying to Campbell River adds quite a bit, and it being such a last minute for a flight I just didn’t have the money, which is where Cassie Hines Shoes Cancer Foundation came in. I had to poke and prod multiple doctors to get the form filled out, but I am not sure I would have made it to Canada without CHSCF.
A few days before I left I got a package in the mail, it was a large box with my name hand written on it and a return address I didn’t know. I quickly opened it to realize it was full of goodies from CHSCF. Goodies I would with have not been able to afford or not have thought to purchase myself. It was the box that just kept giving.
It was a trip I will never forget, we sailed from Island to Island every night, sleeping in tents. We ate off of a camp stove, and drank instant coffee. We got soaking wet and saw amazing stars. We saw starfish by the thousands and watched dolphins dance for us. We sat together next to a campfire pit we had to make every night telling stories and laughing. It was hard and life changing, and I had known I was camping I probably wouldn’t have gone. But do I regret going? No, not at all.
My name is Mellissa Recchia and I am twenty-three-years-old. I was first diagnosed with a soft-tissue cancerous tumor on September 3rd, 2009 at sixteen-years-old. I underwent two years of IV chemotherapy which equated to about fifty-four rounds in total. At eighteen-years-old, two weeks before I graduated from high school, I received my last dose of chemotherapy and was declared in remission. I was able to enjoy a year and a half of “normal” which included starting my freshman year of college. On December 17th, 2012 my routine scans showed that my cancer was once again back.
I was sent from my local Children’s Hospital to MD Anderson in Texas for better treatment. There my doctors came up with an oral chemotherapy that I would take once a day everyday. For two years that treatment kept me stable. Then on August 15, 2015 my routine MRI showed that my tumor had grown resistant to that chemo and had started to grow once again. I was sent back to MD Anderson to formulate a new plan. I am now on twice a day everyday oral chemotherapy that, for the moment, is working.
When I was first diagnosed at sixteen-years-old having cancer was a hard pill to swallow. So hard in fact that I denied that I was sick and only told my close friends and family what was going on. Cancer was not something that I wanted to talk about, that is until I attended Camp Mak-A-Dream. My family and friends have always said that I went to camp one person and camp back a totally different person in all the right ways.
I attended the young adult’s conference at Camp Mak-A-Dream June 9th-15th in Gold Creek Montana. I have been attending this camp for seven years. I started coming to Camp Mak-A-Dream when I was seventeen-years-old, just ten months after being diagnosed and starting treatment. To say that it changed my life is an understatement. Each and every year that I attend camp I fall in love with it a little more. At camp, we do all the things that one would usually think of when they hear summer camp – arts and crafts, horseback riding, swimming, high ropes course, rock wall, and so many more fun outdoor activities. Not to mention the people they bring in to teach workshops such as yoga, meditation, drum circles, look good feel better, and so many other guests who donate their time and resources to camp.
The first time I attended camp I was very nervous, in fact I wrote in my journal the first night that I wanted to go home. I was afraid that I wouldn’t make any friends and that I would not have fun. I was also worried that because of being on treatment it would limit what I was able to do. However, that is not the case at Camp Mak-A-Dream. They strive to create a camp environment where everyone can participate in anything. They will do whatever they need to do to ensure you have the best experience ever.
I think the first time that I realized that these people would be my family is when we hiked up the Butte, which is a camp tradition. Looking up at the mountain, I thought there was no way I could do this. Just as I was thinking that, my new friends came up to me and told me they would make sure I got to the top, and they did just that.
Camp is more than just camp to me; it’s my home. The people there are my family. It is the place where I feel loved, where I feel safe, and where I feel most welcome. Camp gives me a chance to be with other young adults that know and understand what I was/am going through. I am proud to call them some of my best friends. The people that I have met at this camp will always be a part of my life and they will always live in my heart. I would highly recommend every cancer patient to attend a camp of some sort for their age group. It changed my life for the better. Leaving home and your safety net can be scary but if you just take the leap and have faith you will never regret it. Get busy living.
I had a ton of fun at Camp Mak-A-Dream this year, more so than last year, but I think that is because I wasn’t as sick this time around. The things I got to do included horseback riding, shooting pellet guns, archery, and fishing. However, my favorite activity overall was going horseback riding. Before I attended camp I had expected it to be the same as last year’s, so pretty much that I would have an okay time, but I was completely wrong and surprised by how much fun I had while there. Some advice I would give to someone who is about to attend a camp is to try everything at least once and if you don’t like it you don’t have to do it again. For example, I didn’t do zip-lining again this year because I absolutely hate heights. Overall, I had a great time at Camp Mak-A-Dream.
At times I am still in disbelief that I actually went to Peru, even better, to Machu Picchu! If it wasn’t for the pictures that I look over very often, I would have probably convinced myself by now that it was all a dream. You see, I am not much of a traveler. I do not have a crazy bucket list, and I don’t even truly enjoy flying. Traveling to another country, seeing one of the Seven Wonders of the World, and experiencing a new culture was all just a bonus of going on an Odyssey with A Fresh Chapter.
What drew me most to the organization was the opportunity to meet and bond with other cancer survivors who had experienced different journeys and who came from different walks of life. After two different cancer diagnoses, I have been left with a strong desire to connect with “someone like me”. Someone who would understand the struggles and challenges I have faced as a young cancer survivor. Someone who may understand what it’s like to battle this disease as a newlywed, a mom to young children, a full-time student, someone switching careers, or even someone who doesn’t feel mature or old enough to make these huge medical decisions. I have longed to find someone who can relate to all or some of these things. Or even just someone who can truly understand what I mean when I simply say I’m tired.
A Fresh Chapter offered me the opportunity to not only connect with other survivors, but also to volunteer in both an underprivileged daycare and with a cancer support organization in Peru. I have always enjoyed helping others, but to be able to give back at an international level was truly a humbling and incredible experience. It was a form of healing and a sense of peace to know that regardless of my cancer and all the ways I now consider myself “broken”, I was still able to bring smiles, happiness, and hope to the amazing individuals I connected with in Peru.
Among the other 26 incredible people who joined me in Peru, I was able to be a different type of me. I didn’t have to wear the “I am fine” mask or the multitasking hats that I do in my everyday life. I was able to just be Gaby; the girl who still has fears and deep scars from dealing with cancer over the last six years. I was able to be vulnerable, I was able to be honest, I was able to be real. I didn’t have anyone trying to fix me, or tell me that it was going to be ok; I just had people that held space for me to share what I needed or wanted to share.
Although my time in Peru was short, the memories and friendships will always remain. It’s crazy to think how quickly strangers become family. I truly appreciate the generosity of the Cassie Hines Shoes Cancer Foundation for providing my flights to and from Peru. Without this travel assistance I highly doubt the trip would have been possible. For that reason I made it my goal to be present while I was in Peru. I embraced the beautiful views, wonderful people, and the chance to make a difference in my own life and in the lives of those around me. It was truly a once in a lifetime opportunity, and for that I will always be tremendously grateful. A huge thank you to the Cassie Hines Shoes Cancer Foundation and the selfless donors and supporters who made this possible.
Attending Epic Experience in May 2016 in Colorado was just that, a completely EPIC Experience. One week in the Colorado Mountains surrounded by fellow cancer fighters was an experience of a lifetime. We went white water kayaking down the Colorado River, horseback riding through the mountains, stand up paddle boarding (otherwise known as SUP…news to me!) on a private lake, early morning sunrise hikes at 11,000 feet up, and fly fishing at the 7W Ranch pond!
The week leading up to camp I had a lot of anxiety. I was worried about the food they would have knowing my body doesn’t handle unhealthy foods very well. I was worried about being accepted but mostly just worried knowing this was going to be a very vulnerable trip where I would be sharing my experience, which I had suppressed deep down for 4 years since I finished my last chemo in 2012.
One special thing about Epic is they don’t want you to worry or stress about anything during your week of camp. They take control of everything and have everything pre-planned weeks before. As an independent young adult, that was a relief and also a little worrisome for the controlling side of me. Most cancer fighters have to be on top and in control of their health, their life, and their surroundings. You can never be unprepared because that might mean a crisis or a trip to the hospital or hours of pain. So let’s just say, I wasn’t used to not having control. But the feeling you get when you just let go and decide to have faith and believe everything will be okay is completely freeing. That feeling of course came after the panic subsided.
If you have never been to summer camp as a kid, this is your second chance. I had always wished I would have went to camp as a kid but was too scared that I wouldn’t be accepted by the other kids. Going to Epic was definitely the true camp experience. We traveled to all of our adventures on a big yellow short bus that was decorated inside with previous camper graffiti. Music of all genres and years blared from the speakers of the short yellow bus and inside campers and volunteers danced and sung their hearts out! The bus alone was quite the experience. On top of that we were required to pick a nickname. It could be anything you wanted but you had to have one picked before you arrived up at camp, which was a 3-hour drive from the Denver airport. I decided on North.
I found however that my impression of camp did change after I attended. I now see it as an even more magical, life-changing experience than I did when I was there. I now have friends that I can relate to on so many levels. I have friends that I can openly talk to about cancer and the side effects and the struggles and the triumphs. At camp I was quite the emotional camper. I had been holding so many feelings inside that correlated with cancer. Feelings and emotions I didn’t even know were there. Camp is a safe place. There is no judgment coming from others and you honestly feel so at ease and at peace when you’re sharing your story. One of my favorite parts about camp was campfire time. Every night we got the chance to reflect on the day and also share part of our story with everyone. This is where you might say the magic happened (a.k.a. the healing of our souls). Cancer does not come and go quietly from your life. It leaves a huge mark that cannot be erased. Hearing stories from other campers and even sharing my own was so helpful for me and helped me move forward and heal from my scars.
If you have been affected by cancer or know someone who has, I strongly recommend Epic Experience. I know that it can be scary to attend camp because I was scared too, but it was the best thing I have ever done. All the other campers are feeling the same way you are. No one goes to camp with an upper hand or knowing any more info than another.
Maybe this is your first time hearing about cancer camp and you had no idea this experience even existed! If this is you, now you know and you have no excuse to not go or spread the word with any cancer survivors you know. Before I found Epic Experience through an Instagram post, I never knew these camps existed. I went through chemo all alone. Yes, I had family support and support from my friends but that is not the same as being able to talk to someone who has also walked the same path as you. No matter your age, you should fill out an application. At my camp we had campers of all ages from 20-62 and everyone had an amazing life changing experience! Now it’s time to go make your own Epic Experience.
I attended Camp Mak-A-Dream for the first time when I was fourteen years old. Going into it, I didn’t really know what to expect. I thought it would be pretty similar to camps that I used to go to as a kid, but it was so much more than that. At camp, we did all the things that tend to come with a summer camp – arts and crafts, horse back riding, swimming, and a plethora of fun outdoor activities. However, it was not the activities themselves that stand out in my mind, but the people I experienced them with.
At camp, they do their absolute best to make sure every camper gets to experience any activity, despite any physical limitations they may have from their disease. Being paralyzed did not prevent someone from riding the zip line, being fatigue and weak from chemo didn’t stop anyone from jumping in the pool.
The first day, I thought it would be hard to make friends and looking at the agenda, I didn’t see how I could do half of these activities with how weak and ill that I was, but there was not a single thing there that I did not do. After a few hours, I felt like I knew almost everyone at camp for years. One of the most amazing moments I had was during the butte hike, a tradition at Camp Mak-A-Dream. I was with all of my fellow campers and the counselors at the base of this massive cross between a hill and a mountain, thinking to myself “there is no way I can do this”. But the friends I made at camp took my arms, and we never turned back. Together, we all hiked up that butte, the stronger individuals helping the more fatigued campers. I took lots of breaks, sitting down and catching my breath, but never took these breaks alone. Eventually, we all made it to the top, and as I overlooked the most beautiful view of the camp grounds among endless mountains, I was overwhelmed by the beauty of the moment. I felt infinite and invincible, my disease didn’t matter, none of out cancers mattered, because we had made it, and if we did that, it felt as though we could do anything.
Camp Mak-A-Dream gave me confidence, hope, and a positive spirit that I was desperately lacking, and I have returned to this camp year after year. I would recommend any child, teen, young adult, or adult with cancer to go to a camp, any camp, fitting for their age group that is for cancer patients and survivors. No mater how frightening or difficult it may seem, I know it will be worth it. It truly is an experience like no other to be surrounded by so many people who really know what you are going through, and the activities are a lot of fun too! Take the leap, you will not regret it.
On October 15th 2010 I, Taylor Kanas, 27, was given the biggest challenge of my life. I was diagnosed with a very rare form of Lymphoma called ALK Negative Anaplastic Large Cell Lymphoma. ALK Negative Anaplastic Large Cell Lymphoma is a very rare, aggressive form of non-Hodgkins Lymphoma.
I successfully underwent the standard regime of chemotherapy for T-cell lymphoma. And as usual, I had to prove that if I am going to do anything I will do it in style, donning a bald head and fabulous wigs! Unfortunately, it was not clear skies ahead and I was given yet another obstacle to overcome…
On February 15th 2011 I was facing a bone marrow transplant. The procedure would have utilized my own cells that had been harvested the week prior. I had noticed some new lumps on my neck, although the doctor seemed relatively unconcerned, he wanted to run a CT scan to be sure. The results of the CT were alarming which triggered an emergency biopsy. Everyone’s fears unfortunately were confirmed and the lumps on my neck were in fact a relapse of the disease and not just localized inflammation.
I was no longer able to use my own cells and had to go through some very intense chemo, in hopes to put me back in remission so I could undergo the bone marrow transplant. After the tissue typing that was performed I received news that I had rare bone marrow. There is only one person in the world (on the registry) that matched the preliminary tests. Unfortunately, after further testing, that person was not the match. The doctors offered another option that involved using umbilical cord stem cells. This is the riskiest transplant of them all. As my cancer was sure to progress, this was my only fighting option.
The doctors had recommended to undergo a clinical trial at Karmanos Cancer Center in Detroit. They knew that the best results of the bone marrow transplant would be going into it with as little cancerous activity as possible. So, I followed through in a clinical trial, which involved administration of a drug called SGN-35. This drug victoriously led me into remission just in time for the bone marrow transplant.
On June 29th 2011, I underwent a double cord stem cell transplant. I am now over 2 year post-transplant and despite all the trials and tribulations, I’m doing very well. I have a great support team and we are involved in raising awareness and have since created “Rockin’ for a Match.” Beyond raising awareness, our goal is to help raise funds for people needed on the bone marrow registry.
Following my journey, I reached out to other that were going through similar treatments and procedures. I was hopelessly searching, so I thought. Then I was introduced to Camp-Mak-a Dream and different cancer retreats that have greatly influenced me. It gave me a chance to be with other young adults that knew and understood what I was going through. I am proud to call them some of the best friends I have met and I will continue to attend camp as long as I am welcome!
Having cancer is not only physically draining, but financially as well. It is so great that organizations such as CHSC are willing and able to offer scholarships so I can attend camp. I always look forward to seeing my camp family and I’m so grateful for the opportunity to do so!
My Athletes4Cancer surfing trip, Camp Koru, that the Cassie Hines Shoes Cancer Foundation sponsored me to attend this past October 2014 in Maui was nothing short of magical. After being diagnosed with a local recurrence of breast cancer in August 2013 at the age of 34—nearly nine years after my original diagnosis and bilateral mastectomy at—and undergoing a grueling treatment of surgery, chemotherapy, radiation, and medication throughout 2013 and 2014, my body and soul felt absolutely exhausted and depleted. I was so focused on getting through each cycle of chemo and radiation and in constant warrior mode that when the ending finally came, it felt hard to celebrate and shut off the fighter button in my head. I knew I needed to take a break from my regular life and dedicate time to the healing process, and so when I heard of Athletes4Cancer’s surfing program Camp Koru, I was determined to take part in that experience. The Cassie Hines Shoes Cancer Foundation made this a reality by sponsoring my plane ticket to Maui.
When I arrived in Maui, I knew immediately that there was something magical about the island. Perhaps it was because I watched Lost throughout my chemo fog and craved a tropic adventure of my own, but the sheer beauty of Maui—from glorious pink and orange sunrises and sunsets, lush forests, and sparkling volcanic rocks to an ocean that was literally every shade of turquoise and wind that would flip and flap us around as quickly as it would disappear—there is something that is simply other worldly about this place.
I will never forget the first time everything finally connected and I stood up on the surfboard. The momentum from the wave literally lifted me up and gave me the feeling that I was flying on top of the world. The ocean beneath me seemed so still and quiet and nothing seemed to matter other than riding the wave all the way in, my eyes focused on the palm trees in the horizon. It was one of the most peaceful and empowering experiences I ever felt and restored the trust in my body to carry me upward and in the elements of nature to anchor me in uncertain times. After that first connection, I went back again and again to surf more, always thinking of Cassie and her sheer tenacity in life to live in the moment.
I will always remember the unbelievable amount of laughter that I shared among my campmates and the camp staff, now individuals that I consider dear friends, and the sheer amount of silliness we had together. I think I had largely forgotten how to have fun and laugh after ten years of living in cancerland, especially with this past year of aggressive treatment. I felt like myself in a way that I hadn’t in years, shedding so much of the anxiety and fear I had long held on to, and literally staying up late each night in fits of giggles with my roommates over all of the ridiculous moments we had shared that day.
I will never forget the amazing kindness and support that the Camp Koru staff—most of who are survivors themselves or have been personally touched by cancer—showed us. They constantly cheered us on during each and every wave we attempted to conquer and made sure that all of our surf rides were captured on camera. They showed empathy and compassion during campfire each night. Our camp chef Ahi made delicious and nutritious meals that fueled us through every day. The surfing instructors at Surf Camp Maui were patient and encouraging throughout our instruction in stand up paddling and surfing each day, always showing us how the waves are deeper metaphors for the ups and downs of life.
I consider all of these wonderful and kind souls as part of my “ohana,” or family in Hawaiian. I know that no matter what may lay ahead in life, there is an extended family cheering me on. By sharing this slice of paradise, with the ocean and wind moving us in sync together, we are forever connected and bonded. We ride the ups and downs together, eyes always on the horizon, flying on top of the world.
There is something infinitely healing in being connected with nature—the reassurance that the sun will rise after darkness and a new wave will make its way to the shore and then back out to sea. Thank you so much for helping to make this experience happen. I am forever grateful.
Love, Trisha (surf camp name Laka, Hawaiian goddess of song, dance, and forest)
My name is Meghan and I was diagnosed in December 2012 with a medullablastoma brain tumor. The tumor was successfully removed and I underwent 31 days of cranial and spinal radiation followed by chemotherapy for 14 months. During this time, in June, I attended Camp Mak-A-Dream camp for young adults in Montana. It was gorgeous! It was a very relaxing place set in the beautiful mountains. I met many young adults there who have gone through what I have and it made me realize that what happened to me is nothing compared to some of these people. It made me appreciate life more and look at it a different way. Many of us connected through our journeys and it was a privilege to be surrounded by those who have gone through or is going through cancer. We went horseback riding, hiking, zip lining, had camp fires, swam and participated in so many other activities. It really does help to be around those who share a common background about cancer with you. Cancer is something the person experiencing it can only understand along with those who have gone through it. But it’s experiences like Camp Mak-A-Dream that make one stronger.
Being diagnosed with a rare form of Non-Hodgkins Lymphoma a week before I turned 21 was like a punch to the gut. Instead of planning a party with my friends, I was thrown into the middle of biopsies, chemo, surgeries, picc lines and learning medical jargon I never knew existed. It wasn’t until just prior to my last round of chemo that my oncology nurse introduced me to First Descents. I was a park ranger before I got sick and loved being outdoors. Whether it was hiking, camping, or canoeing; I have always felt most comfortable in nature. I went online and read more about FD and what it entailed. My boyfriend (now fiancé) had to go Turkey for work for a month and it felt like a good time to go. I put in my application, was accepted shortly after and was on my way to my first ever cancer camp. I wasn’t sure what to expect when I got there. Part of me felt like it was going to be sitting around the campfire talking about how much cancer sucks and being treated like we were “different”. My expectations were far from reality. We were all different, but only in the fact that we didn’t let our disease hold us back. I left camp that week feeling both physically and mentally stronger.
That feeling eventually faded when doctors’ appointments, scans, tests, and medicines once again took control of my life. The side effects from 16 rounds of chemo were taking its toll on my body physically, while mentally I fell into a state of depression. 2 years after my first experience with First Descents, I felt the need to go back. I longed to be around people who knew what I was going through. I wanted the adventure back in my life. I applied for FD2 and ended up being selected for the same location I did FD1, Estes Park, Colorado. A couple months prior to camp, I was in the hospital fighting a massive infection and lost a lot of my muscle mass and weight I couldn’t afford to lose. I left for camp still questioning whether I would be able to climb yet alone stay at the same pace as the other survivors. That all went away when I met up with the others at the airport and realized it didn’t matter how fast I climbed or how much it hurt. What mattered most was that I was with other people who faced the same challenges that I did. I think the best part was when I was climbing routes from FD1 that I would have never tried before. I was doing my best and felt like I was on top of the world. That quickly changed when we were on our final climb. I was feeling defeated on part of the rock and started bawling my eyes out. The others in my group were cheering me on but I wanted so badly just to give up. Suddenly, it just happened. The tears kept falling but my arms started moving and I was pulling myself up until I reached our next anchor. I just laughed at myself because here I was 450ft up a rock with only a rope holding me in crying because I thought I couldn’t do it. How many other people can say that they went rock climbing in the Rocky Mountains after going through a trauma like cancer? I looked around and saw another girl who had 2 hip replacements just months before camp. Another who was missing half of her foot and still managed to climb without giving up. Being around those same people helped me to realize that it’s ok to get frustrated but you just have to keep trying. It’s not always easy but it is rewarding in the end.
Without attending camp at First Descents, I wouldn’t be who I am today. Cancer has been one of the worst experiences of my life and I will always be haunted with the scars that came with it, but those scars now tell a story of who I am and what I have been through. Whenever I am feeling down, I go back to my memories at camp and think about how much positive has come out of being sick instead of dwelling on the negative. Going to camp has brought out the adventure in me that I thought cancer took away for good.
When cancer bombards its way into your life you automatically become a member of the club no one wants to join. It’s devastating to learn that a loved one has been diagnosed and the emotions one feels when diagnosed themselves is indescribable. For a long time I felt an extreme sense of loneliness after being diagnosed with Non-Hodgkins Lymphoma. I felt misunderstood, betrayed, broken, and especially worried about my future, since I was only 20 years old. But what helped me cope through treatment and continues in my years as a survivor; is the young adult camps, conferences, retreats and summits, that brought me face to face with people facing circumstances that were just as unique as my own. I no longer felt like I was the only person my age dealing with these problems, but moreover I felt my age again.
Camps aren’t just about expressing feelings and overcoming struggles, they are also a chance to just be yourself and not a cancer patient. They are a chance to escape the war zone. When I go on retreats or to conferences I’m less self-conscious because I know everyone understands. It isn’t about acting like nothing is wrong or being someone else for a day or a week; camps enhance who you already are or the “new you” after cancer, and help you to find love and strength amidst cancer through the help of people who understand you. So no, this isn’t the best club to be a part of, but it’s good to know you aren’t the only one and that there are people out there who understand and want to help make this unique journey a little easier if you let them. I urge anyone who has been affected by cancer to give camps and retreats a try because I know without a doubt it will make a positive impact on their life.
When reflecting on my life, I see two people; these two people differ physically and mentally. I think of my life split into two time periods, B.C. (before cancer) and the A.D. (after diagnosis). I believe that cancer changed me in the most positive way possible, it completely changed my social identity. I never felt a part of a single group B.C.; I fit in with the jocks, the academically focused students, the popular kids, the losers, etc. I felt as if I floated from group to group, which had positive and negative effects on my self-esteem. It seemed at times I was stretched too thin and never really owned or was consumed by one group entirely. I felt like cancer came into my life for a reason, my purpose and existence here. Cancer found me.
While I always thought of myself very independent, I never used words such as confident or proud when asked about myself B.C. Throughout my academic career society pushed me to conform one way. A lot of this came from my family and environment, needing to be both academically and athletically acceptable. I identified myself as academically successful, taking all honors and advanced placement courses, and athletically successful, making varsity volleyball, varsity basketball, and taking statistics for my varsity baseball team. But I never felt emotionally connected to those groups, never pride or honor to associate myself wholeheartedly being a jock or scholar. Who would have thought a horrible disease would be the answer I was looking for, a truly life changing experience was necessary for me to find where I belonged.
One of my all time favorite quotes “You know my name, not my story. You’ve heard what I’ve done, not what I’ve been through” perfectly illustrates my emotions when on the topic of cancer. The immense sympathy given to cancer patients is in my opinion belittling and frustrating. Cancer is an ugly disease but is filled with the most beautiful people you will ever come in contact with. The perceptions people have on the cancer community are ones filled with despair and hopelessness when in contrast it is the exact opposite. When I was diagnosed I felt a spark ignite within my soul, determination that fueled my right to live, and enlightenment in the world around me. I was no longer given the privilege everyday to wake up and complain about mundane problems of life and was faced with the reality that every moment and memory was a blessing. Bad news would turn into bad days but my ability to look at the positives and move on in life grew as I evolved into not a new person, only a better version of myself.
Expectations of cancer patients seem to include the following: weak, sick, unhappy, life-deprived, bald, pale, etc. These are obviously not the case. It seems the only way to be seen affected by cancer is in physical ways, to be bald, pale, and overall sickly; when in fact I personally did not lose my hair until a few treatments in, maintained a nice tan throughout, and my body stayed relatively the same built. Until my third round of chemotherapy I was not identified in the cancer group to outsiders, when one looked at me I looked “normal”. Why did physical requirements need to be met to be able to be placed in a group? Both pity and ignorant thoughts only occurred once I physically looked the part, the empathetic and confused stares begun once the hair fell. A group I was mistakenly placed in commonly was the rebel or rocker type; on many occasions I was called out for having such short hair for a women. Once again I was faced with questioning why physical appearance coincided so heavily with ones identity. At first I struggled with the thought of this physical change, but once the event actually occurred and I saw the hair fall to the floor, I knew it was an experience that would only make me stronger. The other emotional and mental expectations of cancer patients could not be any further from reality too. Cancer cannot take away your right to live; you must fight for and stay focused on life. It cannot erase love, whether it is for an individual or activity. You can still live life to the fullest, even though some change must be made, this does not have to hinder your overall view of life. The stereotype placed with cancer patients being depressed and all the same could not be any more false, each individual has their own story and experiences with the disease. Side effects for one individual were certainly not the case for all, differing the mental state each person possessed.
I came to find out just how beautiful people affected by cancer were through my experience at Camp Mak-A-Dream, a week of my life I wish I could replay over and over again. It was here the stigma of the girl with cancer was lifted for a week and medical problems were soon forgotten as I connected on a level I did not think was humanly possible in such a short period of time. The shocked stares were temporarily replaced with acceptance and true understanding of what I was going through. It was here I learned the true literacy I now was apart of. Medical terms, complicated procedures, and daily struggles of this life style were casual conversations in an inviting environment. It was here that I also truly understood cancer does not discriminate in any way, shape, or form. Any race, gender, or age was effected by this disease and it was peace of mind that if were all in it together then no one was alone.
If society listened to only the perceptions and expectations given to cancer patients then they would miss out entirely on the truth that lies behind it. They would miss the opportunity to meet the strongest and most inspirational people out there. Another favorite quote, “You were given this life because you were strong enough to live it” captures my thoughts on survivors, a secondary group within the cancer identity I placed myself in. Although I do not only view survivors as living through cancer, I define survivors as those individuals that decided to take their life in their own hands, those who don’t back down in the face of death, and those who have the power to change others. In my mind this identity stands as a social elite and I think of myself as extremely fortunate to be able to be apart of it. Survivors have tasted the deepest depths of life and been able to climb out on top. They have felt the lowest lows of existence and reached the highest and ultimate prize of continuing a better person. Although their journey to outsiders seems to end once their body is wiped clean of the cancer, their world has forever been changed; the memories and experiences stay fresh in the mind even when the scars fade and hair grows back. Survivors are left with the aftermath just as with a storm, the mixed emotions of months upon months finally coming to closure. The eternal victory over life itself is one be to enjoyed, but most survivors won’t tell you the agony and fear they posses of the disease returning. This brings me to my final thought on my identity I now possess, I know now what comes after my physical appearance returns to “normal”. When the treatments and medicine routines end, and hair grows back I will forever be classified as a cancer fighter and survivor. Cancer is part of my past, present, and future.
I was first diagnosed with A.L.L at the age of 5. Even though I was going through treatment I was always a happy kid and never complained about anything. My biggest worry was what the other kids would think of my bald head,it turned out they liked it! Skip ahead some years and I’m graduating the 8th grade,living life like a regular kid. Unfortunately during my 9th grade year I relapsed on my 6th yr anniversary of being in remission. Things were totally different this time around. As I’m starting treatment again I slowly lose my ability to walk and things got very tough for me. I had to learn to sit up again and the slightest touch could knock me over. All that therapy paid off because a bulldozer can’t knock me over now lol. I always believe things happen in life for a reason. This literally happen to me when the doctor told me I relapsed with a different cancer, C.M.L. A week before the doctor told me about my new cancer I had done a research paper on the same type. I wasn’t worried at all, I was ready for this one. Now I’m in remission from all cancer.
As far as camp goes I was so nervous my first time going. I had never been on a plane or away from home by myself. My biggest concern was how would I have fun in a wheelchair at camp. It was amazing. I was ready to go back before I had left. My most memorable time at camp was when I met Jordan and Cassie who are my guardian angels now. It was like we were glued at the hip because we did everything together. Camp takes all your fears away, everyone knows what you are going through and you instantly bond. You get to vent and get things off your chest that friends back home just don’t understand. Camp is a confidence builder I never imagined that I would be able to go on a zipline or play drums in a drum circle. It just feels nice to fit in and not have people stare at you. I love camp and I will continue to go every opportunity I get.
On December 23, 2008, at the age of 30 I was diagnosed with acute lymphoblastic leukemia (ALL). When the doctor told me, I would not return to work I cried. I am a teacher and teaching for me is a calling. I love my students. Throughout my treatment when I could, I would go to work. I had treatment every twenty-one days. I wore a mask and I let my students see my beautiful baldhead. Before getting sick, I always had a smile and I missed my students seeing it. I decided to put a pair of lips on my mask so that the students would see my smile. Of course, they enjoyed it. I wanted my students to know that even in the midst of my pain I was not giving up. In May 2009, I had a stem cell transplant from my identical twin sister. God is good! This journey has not been easy but I am blessed beyond measures. I had friends and family that supported me but no one really understood what I was going through. I did not know any other young adult that had cancer that I could relate to. I found Camp-Mak-A-Dream which is a cancer camp in Montana that is available for individuals that have or had cancer. With the help of friends, I have attended camp for the last three years. Camp is very special to me because everyone that attends understands the journey of cancer. It is an amazing place that has truly influenced my life. It has helped me embrace my journey and to live life to the fullest, and have no regrets. I am able to share with others that no matter what obstacle life may bring that they can overcome.
I was diagnosed with breast cancer at 29. The first reaction was always astonishment, followed by the always reliable “You’re too young.” Clearly I wasn’t too young but my age did help me deal with all the changes cancer would bring into my life. I had a wonderful support system, comprised of family and friends, co-workers and students I taught. I was surrounded by love 24/7 but I was in a world of my own. At the cancer center where I received treatment I was ALWAYS the youngest patient. The support groups were for people who were at least 30 years older than me. As much as my family and friends wanted to share my experience, the fears and struggles and pain were mine alone to bear. At least that’s how it was for the duration of my treatment. It wasn’t until I discovered First Descents that I realized I could have friends who KNEW and UNDERSTOOD and HAD BEEN where I was. First Descents brought me close to some of the best friends I could ever have made. We shared war stories and compared medicine bottles, showed each other our scars and tattoos commemorating milestones such as one or two or three years cancer free. The friendships I made and the freedom I felt while attending camp is something that can’t be described. It’s a feeling of freedom and companionship, it’s the peace that comes with sharing something so personal and painful that unless you’ve been there you’ll never understand. I tell everyone I can about cancer camp and how it saved my soul and made me realize I was and always will be bigger, stronger and more powerful than any fear I may have about facing life as a cancer survivor.