When I walked out of the Willamette Valley Cancer Center on February 1, 2014, I was given the stamp of ďno evidence of disease.Ē As the doctors read my test results, they off-handedly told me that I should be feeling better in no time. There was no discussion of recovery either physical or emotional. As I walked out that day, I felt hopeful. The nightmare that my life had been for the last few months was seemingly over. As the sun kissed my bald head, I smiled as the wind brushed my cheek. I momentarily felt relieved. I have a second chance. I thought. I get to live.
I had no idea that some of the hardest moments were yet to come. My doctor did not mention that young adult cancer survivors have the highest levels of post-traumatic stress disorder among cancer survivors or that they typically experience high levels of health anxiety, social isolation, general anxiety and depression. There was no mention of the long-lasting effects of chemotherapy. I walked out with no compass on how to navigate my own recovery. While the resources during cancer were piled on, afterwards I was left with no tether, floating alone, trying to understand what was happening.
The relief I had initially felt after my last day of treatment quickly subsided and everything I had gone through started to hit me. The emotions knocked me over like a wrecking ball as I started to realize what I had just been through. The fear came, then the grief, the anger and the anxiety ó so much anxiety. I felt frozen, depleted, exhausted and scared. Throughout my diagnosis and treatment process, I had endured nearly constant physical and emotional stress. At the age of twenty, I was forced to face my own mortality and a body that was frail and weak. I did not initially grasp that this was a trauma both physically and emotionally.
Three short weeks after chemo, hair not even sprouting back in, I tried to start running and was brought to tears by how hard it was. My formerly active and athletic body felt completely foreign. I did not feel the same sense of connection to my body and actually felt scared to be in it. Nothing in me trusted that I was okay. I quickly felt frustrated by the fact that I wasnít feeling back to my old self, and I judged myself for how tired I still felt. I felt isolated and removed from the life of my friends as they worried about regular 20 year old stuff. Meanwhile, I was worrying about how I would get through a few hours of working without collapsing in exhaustion.
As life moved along, I went to finish college and transferred to a school in Colorado. It was my chance to feel ďnormalĒ again and I was seized with the deep desire to regain the youth I felt had been taken from me. I wanted to live the life of a twenty one year old girl not the life of a cancer survivor. I had already spent too much time in bed on the sidelines of the life I thought I was supposed to be living. So I jumped in: I made friends, I fell in love, I drank tequila and danced until the wee hours of the morning. I went for rigorous hikes, I drank coffee, and then more coffee and thought that if I pushed myself harder that the omnipresent fatigue would go away. I thought that if I did a little bit more and tried a little bit harder, the thick dense fog that encapsulated my head would lift and everything would finally feel clear.
At first I tried to ignore the emotional weight that was trying to pull me under ó the frequent and obsessive anxiety about my health, the intrusive thoughts, the sadness, the overwhelm, the triggers and the panic. However, these things demanded to be felt. The panic would come bubbling up ó first a trigger, a quickening of my heartbeat, the feeling that I was losing control, and then I was. I would grasp desperately to reality but it would slip from me until I felt like I was drowning. I would begin to exist in flashbacks: in bald heads and dry heaving, in the ever-present fear of dying, of needles and the dripping of the chemo machine, in the feeling of unimaginable weakness, of sitting on the floor of my shower because I did not have the energy to stand up. It was terrifying to get lost in these panic attacks, to feel dissociated from both my body and reality itself. It was post-traumatic stress disorder. My nervous system was weakened, hyper-aroused and always on the lookout for danger. I had meltdowns in grocery stores. I fell apart when something small went wrong. I laid awake for whole nights with fear and dread washing over me. I struggled to have a handle on my daily tasks, always in a fog, often out of body.
How do you exist in a body when you feel that it betrayed you? I did not know how to inhabit my body in the same way anymore. The embodiment and physicality of my existence pre-cancer was gone. I escaped into mental realms because being in my body scared me. I did not trust that my very own cells would not attack me again. There were parts of me that were angry. How could my body turn its back on me in this way? I began to fall in and out of long periods of inactivity. I would feel so stagnant and stuck that I seemed to not be able to will my body to do yoga, to walk or to dance. I would fluctuate between being bed-ridden and pushing myself to do exercise that was too intense for my physical state.
During this time of my life, I didnít let myself heal in the way it needed to. I felt torn between what I knew deep down I had to do and the desire to feel young. In this internal battle with myself, I ignored the signs my body was giving me. What I needed from the beginning was to rest, but the grief of losing my youth was too vast, too all encompassing to feel. Despite my intense fatigue, I pushed myself for years to feel alive ó to be enveloped by romantic passion, to get the endorphin rush of extreme exercise, to block out my pain with alcohol, to feel anything but what I actually needed to feel. I wanted to keep going at all costs.
Itís not that I did not take steps to heal during these years. I saw therapists and acupuncturists and I spent weeks in the wilderness searching for a home within myself. I tried every single health fad and supplement that you can think of. I practiced yoga off and on and found it a gentle way to enter my body. I was lucky enough to attend a university that let me explore and understand what was happening to me. I studied what is happening to the body and mind during PTSD and I wrote a thesis on healing trauma in young adult cancer survivors. My life wove in and out of dropping in and listening and then pushing away my needs. The healing was slow, and it was far from linear. I would feel that I had finally moved on only to be confronted with another spell of 3 am wake ups with the overwhelming fear that I was dying. Every year since my diagnosis has provided another layer, another level of healing. I have seen the depths of my darkness, and I have somehow risen from it over and over.
I have struggled to speak about my recovery because a part of me felt that it should have been easier and part of me didnít have the words to articulate how much I was struggling. I wanted to have it ďtogetherĒ and I didnít. I thought I would wake up after cancer with a renewed sense of life and that I would smile everyday just because I was alive. Iím not ashamed anymore of how hard this has been for me. Iím not ashamed of how sensitive I am and how long it has taken me to recover.
There of course is another side to this story, the side you would see on my social media. The side in which I have cancer, drink some green juice, start a new and wonderful life in Colorado, go to school and graduate successfully and do adventurous and exotic things like spend a month with fourteen strangers in the back country of Alaska and move to Norway for six months to be a sea kayak guide. Itís not that itís fake, but it is only part of my story. I want to be authentic so that maybe one other cancer survivor will feel a little less alone. In my opinion, recovery is not talked about enough ó certainly not in treatment centers. Itís a long process. Healing is not easy. It is five years later and I just now feel that I am recovering from my cancer.
To my medical doctors this would not make sense but to me it does. In the past year, I have moved back home with my parents to let myself actually fall apart. I let myself feel the fatigue and the headaches and the brain fog and the grief. I had pushed myself hard enough that I could not go forward, that I collapsed. I gave up my obsession with finding my youth and started defining what I needed to be healthy for myself. I started listening to body, befriending it, and giving it what it needed. I stopped trying to be the person I was before cancer and accepted a new reality. I have started to define youth in my own terms ó as getting ten hours of sleep a night and being sober, as gentle exercise and exploring embodiment through yoga and dance and as giving my self complete permission to take care of myself in whatever way I need. It has not been easy, but with each day I dedicate to my healing, I begin to feel stronger.