Bravery

IMG_2670I still remember the night we tied the string bracelets around our wrists. It was the last night of camp after a week of whitewater kayaking on the wild Rogue River in Oregon. I swear there must’ve been a million stars in the sky that night. I’d never seen so many of them all at once.

After a solemn time of recognition for what we’d been through as cancer survivors and a time of remembrance for those who are no longer physically with us, our camp family paired off and tied the string bracelets around each other’s wrists. The strings represented the unity and sense of family that comes from conquering your fears together, and served as a promise to keep “out living it.”

While there’s no explicit rule that you have to keep your bracelet on for forever, it’s more or less understood that it’s good luck to wear it until it falls off. I kept mine on from that last night of camp until a few months later when I completed my last dose of chemo. My bracelet was tied loosely enough to take off without having to cut it. When I completed my last day of chemo, I slipped the bracelet off and tucked it away. There were too many emotions to process. I needed to forget them for a while.

A while turned into almost a year. From time to time, I’d look back fondly on the friendships and memories I made that week on the river, but I restrained myself from thinking about it too much. The painful reality was that these people I’d come to care for so deeply were suddenly out of my life just as quickly as they came into it. Sure, there was Facebook and email, but it wasn’t the same.

The other part that hurt even more was knowing that some of them were still in the midst of their struggle with this disease. While I rejoiced with my FD family over my completion of treatment, I also felt guilty when one of them received bad results from some scans shortly afterwards. It didn’t make sense. Why him? Why was I doing fine now but he wasn’t? These questions haunted me in every quiet moment.

BraveheartIt’s now been a little over a year since I went to camp, and a little less than a year since I took off that bracelet. Last night, that guy from my camp family died. My heart felt like it broke into as many pieces as there were stars in the sky our last night of camp. His FD name was Braveheart, a name he’d certainly earned on and off the river. He had the spirit of a champion, of someone who looked his fears in the eye and growled back. He wore his string until his very last day. Last night, I put my string back on for the first time.

It’s time for me to remember those emotions, to accept what has been, and to cherish the memories, no matter how bittersweet it may be. It’s not enough to say “I conquered my fears once.” I want to be able to say I am living brave-heartedly, conquering my fears every day until my last day. I am better for having known Braveheart, as well as all of my FD family members. Braveheart, you are remembered dearly and the inspiration you gave to all of us lives on.

 

Elise Intern LS pic1Elise Frame (“Lil Sis”) is a 23 year-old student at the University of Texas studying Communications with a focus on Nonprofit Development. She was diagnosed with acute lymphoblastic leukemia at age 20, but recently finished chemotherapy and was declared cancer-free in October 2014. Elise participated in an FD1 kayaking trip last summer and discovered a previously unknown love for the great outdoors. She now enjoys stand up paddleboarding and kayaking on Town Lake in Austin, Texas, where she currently lives. As a passionate young adult cancer awareness and prevention advocate, she has served as an intern a

One Day At A Time- PTSD and Anxiety after cancer

ONE DAY AT A TIME | BY ELISE FRAME

Sometimes it’ll just hit me all at once out of nowhere.

I’ll be in the car driving home, or walking around on my college campus and then suddenly… I’m crying. And I mean like ugly crying… hardcore sobbing with streams of tears rushing down my face. My hands usually start trembling and my knees go weak. I just want to curl up in a ball and disappear. Sometimes it gets so bad I can’t even see anything in front of me. All I can think of is, Cancer…I had cancer.

And the strange part is, most of the time I don’t even really know why I’m crying about something that happened to me over two years ago. I don’t feel anything except the numbness that echoes through me like footsteps in an empty hall. But still, my whole body tenses as if I’m staring down an invisible enemy. In my head, I know I’m not in any immediate danger. My brain is telling the rest of me to get it together and suck it up. Don’t be such a baby, you’re fine now, I try to tell myself. But of course, that doesn’t help.
Something insignificant triggers a piece of a memory, and then at once it all comes back to me. Half-second memories and nightmares flood my mind, causing each breath to feel like a desperate gasp for air before drowning. I try to stay focused on the present, but visions of the past demand my attention and force me under. Needles going into my chest port, painful bone marrow biopsies, liters of neon yellow chemotherapy, blood and platelet infusions, being violently ill, wheelchairs, electrocuting pain all over, wondering whether the chemo or the cancer would kill me first, wondering if it will just come back one day anyways…

As I drop to my knees shell-shocked, I realize… I am drowning inside of myself, and no one else even knows it.

Eventually, I reached a point where I had to talk to somebody about what was going on. Thankfully, I was able to receive free post-cancer counseling therapy through a local nonprofit. Talking with my counselor about these thoughts and feelings has helped immeasurably, and I would highly recommend anyone who has been affected by cancer (whether by their own diagnosis or that of a loved one) seek professional counseling. My counselor told me I exhibit many signs of PTSD (Post-Traumatic Stress Disorder) and anxiety, but that it’s not uncommon for survivors to experience those issues after treatment ends. It hadn’t really occurred to me before that this might actually be a common struggle for many other adolescent/young adult (AYA) cancer survivors, too. Maybe I wasn’t just “being a crybaby.” Maybe this wasn’t something I could just force myself to “get over.” Maybe this was somehow… normal?

After talking with my fellow FD campers, my suspicions were confirmed. PTSD is a fairly widespread issue among AYA cancer survivors, often accompanied by other underlying issues such as “survivor’s guilt,” depression and anxiety. Not everyone experiences these problems to the same degree, and some do not experience any of them at all. But for those of us who do, these mental and emotional struggles can be every bit as crippling as the physical challenges of cancer and treatment. Unfortunately, there is still a large gap in information, research and resources available that address AYA cancer survivors’ mental health issues during and after a cancer diagnosis and treatment.

First Descents plays a crucial role in filling part of this gap by providing AYA cancer survivors with the chance to connect with one another and find healing through incredible outdoor adventures. FD provides survivors with a chance to redefine their physical and mental limits by learning a new outdoor skill. Furthermore, FD helps survivors reclaim their bodies from disease to use as strong, capable tools for adventure and fun, rather than seeing themselves as broken or sick victims.

I wish I could tell you that during my FD1 kayaking trip I mastered the roll, or even a simple T-rescue. But I didn’t. I was too scared to be willingly flipped over in my kayak with my head underwater. The fear of being out of control, trapped, and drowning was too overwhelming for me. At the time, I didn’t understand why. But now I can see how to a large degree, it was my PTSD and anxiety that held me back. The feeling of drowning was all too present in my daily thoughts for me to be able to enjoy those underwater exercises. I chose to stay upright in my kayak as much as possible that week, and honestly, I still felt every bit as happy and accomplished as any of the other campers by the end of the week.

That’s part of the beauty of FD. They encouraged me to go beyond what I thought my limits were (both physically and mentally), but they never forced me to do something I didn’t feel safe doing. The motto of the week was, “Choose your own adventure.” For someone who hasn’t had much say in what’s gone on in her life, it was refreshing to have choices.

I learned tons of valuable lessons about myself and about life in general during my week on the water. I learned that life will throw you rapids, and sometimes your only option is to ride straight through them. They may end up being the most fun thing ever, or can be as scary as hell. Either way, it’s up to you to decide how you’ll tackle those rapids and what your mindset will be when riding through them. Your mindset probably won’t change your circumstances, but it certainly will change your experience of those circumstances.

I also learned that my body is stronger than I thought it was. I am (surprisingly) not made of glass! Or cancer! Who knew? After my week on the river, I was inspired to spend more time outdoors enjoying nature and being physically active. So I started out simple by go for long walks, then I started running, then I moved on to horseback riding, and soon I hope to get back in the kayak and master those skills I wasn’t ready to try before.

With PTSD and anxiety, there are good days and bad days. Counseling, friends, family, writing, art therapy and being active outdoors have all played a part in helping me outnumber the bad days with good ones. As I apply the lessons learned on the river to my everyday life, I’m finally reaching a point where I can roll myself upright from the waters of a bad day. I’ve finally found the creative outlets, resources and people that can help give me a T-rescue when I feel the rapids of PTSD pull me under. Even though the panic attacks and episodes come every now and then, they don’t scare me as much as they used to. I’m getting stronger, one day at a time. And who knows? Maybe, just maybe I’ll go on an FDX trip soon, and I’ll be able to roll and T-rescue with the best of them. After all, I’ll have had lots of mental practice. 😉

Elise Intern LS pic1Elise Frame (“Lil Sis”) is a 23 year-old student at the University of Texas studying Communications with a focus on Nonprofit Development. She was diagnosed with acute lymphoblastic leukemia at age 20, but recently finished chemotherapy and was declared cancer-free in October 2014. Elise participated in an FD1 kayaking trip last summer and discovered a previously unknown love for the great outdoors. She now enjoys stand up paddleboarding and kayaking on Town Lake in Austin, Texas, where she currently lives. As a passionate young adult cancer awareness and prevention advocate, she has served as an intern at The LIVESTRONG Foundation, and currently contributes to The Huffington Post‘s young adult cancer blog series, “Generation Why”.

The participant’s perspective- Shark Bait

This evening marks the end of my third full day of FD1 Kayaking camp. I am loving it. Today, we had a blast whitewater rafting. Two days ago, during the skill-building on the lake, we began to see just how powerful a metaphor kayaking is for life and our cancer journeys. Yesterday, however, was not a good day for me. But because of the powerful opportunity for self-exploration and bonding that First Descents provides, in retrospect, Day 2 was the best day so far.

Day 2 was our first day on moving water. A class I river, the objective was to learn to navigate with the current and minor obstructions. Despite my great interest in mastering these techniques, I could not concentrate on Big Papa’s lesson. I felt fatigued, nauseated, and had a severe headache, likely caused from a combination of dehydration, changes in my diet, and chemo lingering in my body from the round I’d concluded fifteen days earlier. I was so out of it that I couldn’t follow his instructions and had trouble staying with the group.

When we pulled up on the shore for lunch, I walked right past the cooler and lay down in the back of one of the vans. Number Two, a staff member, checked on me. So did Mack, Brave Chicken, Junior High, and several of the other campers. Already we are a family. Hatschi joined me in the van. She did not feel well either, but her pain more easily could be explained. She is on a daily oral chemo regimen. Her body is working hard to fight the cancer, and her mind is working even harder to maintain her inspiring courage, grace, and wit.

While the others ate lunch in the great outdoors, Hatschi and I rested within the close walls of the van. I willed my headache to go away, so I could get back on the river. I do not fear the river. Being a retired competitive swimmer and rower, I am at home in H20, and so far, the threat of rocks and rapids hasn’t seemed to diminish this. My challenge is to learn a new sport, and incorporate these wonderful lessons and metaphors into my life on land. (My bravery, however, may evaporate once I’m actually staring at a Class II or III stretch of river.)

By the time the lunch break had ended, my headache and nausea had not dissipated, and so back to the cabins I went with Hatschi and Mia-Root, our chef. Instead of feeling the freedom from cancer in the cool of the river water, I could taste disappointment with each swig from my water bottle. I was so, so sick of being sick. Here I was, yet again, missing out on life.

But the afternoon of Day 2 proved to be anything but a missed opportunity.

First, I realized that at times, life, just like the river, will run its own course. I may want to paddle to the right, but if the waves indicate that the water is flowing to the left, then that is the route I must take.

I want to never have had cancer. I still get so angry that leukemia happened to me. But if I insist on keeping my eyes on that “perfect” life beyond the rocks that cancer has thrown in my path, I will head straight into them. There I will remain, stranded. Instead, I can paddle toward where the water flows—a life with fears and an imperfect body, but one that moves forward to great places nonetheless.

Thinking of my headache that morning as simply a rock that diverted my path made it easier for me to “go with the flow” and get over having missed out.

The second, bigger aspect that made Day 2 the best: my rough morning made Hatschi’s afternoon better. Instead of being back at the cabins with only our chef who needed to prepare a large meal, Hatschi had another camper’s companionship. Sitting in bar stools at the kitchen counter, we ate crackers and sipped tea. I tried my hardest to make wiseass comments that would make her laugh, and she cracked me up with her effortless sense of humor. The 15 minutes we spent giving our good-spirited chef some honest, constructive (and funny) feedback on her apple muffins were 15 minutes during which Hatschi did not think about her health concerns.

Since Hatschi and I had followed the same wave train that led us off the water that morning, I shared the soothing river current analogy with her. She got it before I’d finished the thought.

At the end of the campfire gathering that evening, the three award recipients from the previous night passed on their honors. Hatschi had won “On Water” the first night, for her admirable effort to push herself to master the basics on the lake. Who did she choose to pass her award to for Day 2? You can probably guess, though I can honestly say it hadn’t occurred to me that she would pick me. In my eyes, I’d been a failure on the water. In Hatschi’s eyes, I’d managed to get through 50% of the day’s boat time, an accomplishment we shared. When she handed me the yellow muscle shirt and tie-dyed shorts, she hugged me while crying. I understood through the strength of our embrace that the On Water award for Day 2 had nothing to do with water.

-Shark Bait (hoo  ha ha!)

Hippy: A First Descents Camper Perspective

By Benjamin Rubenstein

“Hey Benjamin, do you have a nickname?” one of the camp directors, Scooter, said upon my arrival with my First Descents rock-climbing group in Moab, Utah, on Memorial Day. Friends and coworkers call me Ben, but that abrupt syllable was too mundane for this adventure. “My left hip was removed due to cancer, so I’ll go by Hippy,” I said.

Scooter explained that nicknames create alternate identities from our cancer survivor egos. Most others chose nicknames based on their given names: Lil Wayne replaced Wayne; Gnomers for Naomi; Aimster for Amie. It seemed I selected the wrong nickname considering it is based on my disease.

I had seen a First Descents display at a cancer survivor conference last May at George Washington University, which I attended for networking purposes. The display caught my attention for two reasons: rock-climbing sounded fun, and the trips were free for survivors.

I was diagnosed with Ewing’s sarcoma, a rare bone cancer, when I was sixteen years old. Cancer led me to create rules to live by, which disassociated me from the cancer community (and reality). I wouldn’t volunteer at Camp Fantastic despite nurses begging me, or accept friendships from other patients. I felt superior to them all—an unethical yet powerful defense mechanism.

My rules will always remain, though now I accept they can be bent. Had I considered First Descents a support retreat instead of an adventure then I would have rushed past the display. Maybe I bent that reality. Either way, I signed up immediately.

Our program consisted of 15 “survivors” aged 20-38, a gray term considering some had completed treatment, some were in treatment, and some about to begin again. We discussed diseases and scars the way Washingtonians do careers and traffic. My teenage self would not have approved breaking my No Complaining rule (just mentioning “cancer” was an act of complaining). Actually, he would have been disgraced and probably untied my rope while I climbed Wall Street.

My teenage self would not have scoffed at the laughter, however. Single testis and breast, large cervix and uterus, near-deafness, left hiplessness: all fair game, thanks to cancer, and hilarious. We meshed more than any large group I have been a part of. I spent my adult life pushing the cancer community away, and after one hour I forgot I was supposed to be better than them. We were all Cancer-Slaying Super Men and Women. But I digress, how can I forget that I attended only for the adventure?

Soon after I begin the climb I reach a tall, flat segment. No holds to my right. I can climb around the flat to the left like everyone else will. But my hipless left side doesn’t move that way: it lacks the range, hip flexor strength, and push-off. I look up and see the best hand hold I could hope for, a thick protruding jug with space for my fingers to grip underneath.

I contract my right calf and stand tall on my toes, stretch out with my right arm, lock my elbow, and feel the red sandstone with my fingertips. I creep my hand up until my hold is secure. My rope is tight, belayer ready, and teenage self in awe rather than disgraced.

I match my hands and let my feet fall. I shoot my elbows down, forcing the rest of me up. My head now elevated high above my hands, I maintain position with my left arm and let go with my right. I swing towards a hand hold two feet to my right and grab it. My arms will tire if I don’t find a ledge to stand on, but I see nothing. So I extend my triceps as my body climbs up and up and up until my elbows lock. I mantle with my right foot and carefully rise, brushing the wall with my shoulder. My forearms are exploding, new friends cheering, and heart overflowing.

*

I lost my left ilium to cancer 11.5 years ago after a childhood defined by athletics. After surgery I required 16 months of intense physical therapy before I could walk without a cane or crutch. Radiation later killed and deformed my hip joint. I will never run or jump again.

I filled the void with darts, H.O.R.S.E. and Ping-Pong. The athletic competition was still missing, though. It is no longer. I see recreational rock-climbing as attempting to reach the top of the route. There is no time limit or points system based on technique or gracefulness. My useful limb count may be 3.5 at best, but there is no deduction for missing body parts.

I failed to complete the crux on that route I described, mostly for a lack of height than hip. But my supportive group still raved about my Cliffhanger-like maneuver. I relished their support. “Support”: I shudder to think how my teenage self would view me for using that term positively.

First Descents was more than just an adventure. We all benefited in different ways. KMac, the victim of social anxiety thanks to cancer, hadn’t felt that comfortable since she was ten. Aimster stopped feeling guilty for only having survived thyroid cancer. Sunny understood that people provide support differently.

I learned that I never have to justify or compare myself to peers. My “normal” has changed the way a horizon changes based on the observer’s position, one no lesser than any other. My physical disability and innumerable other “abnormalities” are not a function of me, but rather what was done to me.

I have been well for so long that my position is usually observed as a cancer survivor. KMac was one of only two longer-term survivors. She has survived four times beginning at age eight. Lings had her ovaries removed three days after returning home from Moab. Her tumor-ridden appendix was also removed, but her uterus thankfully remains. We found that hilarious. Sunny’s three-month restaging showed she is not cancer-free. Somehow she still found a way to crack up about that, in between sobbing and zoning out.

It is so easy to forget my roots. KMac, Lings and Sunny changed my observation point, and I relish the perspective refresher. It won’t last forever, though, which is both saddening and necessary in order for us to be productive and functional in society. I now want to support these other Cancer-Slaying Super Men and Women because I need them more than they need me. I cannot wait for my next perspective refresher at an FD2 rock-climbing program in 2013. I expect Lings and Sunny to be there discussing their uteri and even cervices if they wish.

Hippy was a perfect nickname choice. I do not need to separate myself from my disease because it is a part of, and has helped shape, me. I have found a new favorite hobby because of my disability. Hippy is not justification for my inability to perform difficult climbs (or anything else in life)—it is the reason I will try. Besides, it is hilarious.

Hippy is the author of TWICE: How I Became a Cancer-Slaying Super Man Before I Turned 21, as well as the blog I’ve Still Got Both My Nuts