RE-INTEGRATING BACK TO LIFE AFTER CANCER
About two years ago I was diagnosed with blood cancer. Hodgkin's Lymphoma is cancer of the lymphatic system that affects less than 200,000 people in the US each year. Some symptoms of Hodgkin's include swollen lymph nodes (in the neck, armpits, or groin) fatigue, fever, and night sweats.
I have had quite the roller coaster of mental health issues that came with battling this cancer, and mostly the aftermath. What people often don't realize is that it's so easy to focus on the fight and the end goal of "beating" a cancer diagnosis, but once everything is over and it's time to integrate back into "real life," that is when mental health really hits the fan. It's so important to handle your emotions as they are happening, not pushing them down, which is something I learned the hard way. I celebrate that my mental health journey is a complicated one - there are ups and down, laughter and tears, and that it is in fact a journey. You don't wake up one day not depressed, or not struggling with anxiety, but every so often you wake up and realize that today is a little better than the day before.
In 2017 I was about to graduate college, and was so excited to start “real life.” Amidst all of the excitement though, I was getting sick all the time. I was spiking fevers most days of the week, and was inexplicably exhausted all the time. My limbs ached and I could barely stay awake during dance classes. It was easy for me to place the blame on being a BFA Dance Major, rehearsing for end-of-the-year shows, training for a new job, and barley sleeping or eating balanced meals. Once graduation was over and my schedule had calmed down, I continued to feel the same way, but now without what I thought was a valid reason. I was so used to feeling sick that even on days I thought I felt well my dance teachers would ask me if I was ok. A lot of people were expressing concern about me, but after seeking medical attention and being told I had Chronic Fatigue Syndrome, I didn't think there was any further action to take.
Finally after a few months of feeling this way, I had eight consecutive days of spontaneous fevers, an awful cough, and the worst exhaustion I had experienced to date, I called my doctor and demanded to be reevaluated. I was sent for a chest X-Ray that ended with a call from my physician letting me know that I had not only Pneumonia, but cancer, and should go to the hospital first thing in the morning. For the record, Hodgkins Lymphoma cannot be detected by an X-Ray, and requires a biopsy for diagnosis. After a week of hospitalization I was officially diagnosed with Hodgkins, the right way, and began to set up a plan for treatment.
I ended up being in the hospital for practically the whole month of August, where my attitude was “get it done, the end.” I didn’t want to talk about anything besides what was necessary in the moment, and I was ready to do what I had to do so that I could close this chapter of my life and never look back at it again.
Social workers and Psychologists would come in and ask if I wanted to talk and I would literally tell them to get out of my room. I was the worst hospital patient. I was so mean to everyone who came in because I didn't want to be there, and thought that I deserved to be angry. The whole time I was more or less ignoring what I was going through, even though I was doing everything that needed to be done to get it over with. Being in the hospital made it pretty difficult to fully ignore, but once I was home and completing outpatient treatment I was so set on doing everything exactly how I was doing it, just also with cancer. “No one's going to have to know unless I tell them,” I thought. The moment the doctors cleared it I was going to work, going to dance class, choreographing pieces, leading rehearsals, and trying to live my “normal” life with pesky chemo breaks leaving me bedridden for 4-5 days every two weeks.
I was using these cold caps to freeze my scalp, so that my hair wouldn’t fall out. This was my saving grace, it ensured that no one would ever know by looking at me that I was a cancer patient. Instead of a port, I had a PICC line in my arm, which was more or less three tubes dangling from my arm at all times. I would wrap my arm in flesh colored bandages, wear long sleeves, and look just like an ordinary person. “This is fine. Everything is fine”, I thought. Of course, I told my friends, my dance teachers, and my coworkers, but I didn't want to publicize it to the world. If you knew me, you knew that I was sick, but I knew for sure that I didn't want to be “That Girl With Cancer” to a stranger on the street (or in dance class).
Once I switched care providers, my new doctor told me I couldn't use the cold caps because restricting the blood flow to my scalp would mean not guaranteeing that all of my blood (which had cancer in it) would be reached with the chemo. This was when I had one of my biggest meltdowns of my diagnosis. My hair falling out would mean that everyone would know by looking at me that I was not a healthy person - the last thing I wanted was pity, or for people to think I was less capable of doing things because I was ill. My hair falling out would also put a wrench in my plan of finishing treatment and pretending it never happened, as I would be reminded every time I passed a reflective surface, took a shower, ran my fingers through my hair, I would remember that I was, in fact, a cancer patient.
When I was finally done being sick, I regretted not having embraced it—I really did. I wish that I had let myself feel things more and accept that this is what's happening and it is okay. Even after my hair started falling out, I refused to “give in” to cancer by shaving my head. I cut my hair short and I let it fall out until I looked like a balding man, but I held on to those few straggly hairs on my head. Whenever I performed on stage, or went to a social event, I would always wear my wig—I would have hot glued that thing to my head if it meant not sticking out for being the girl with bald spots, the girl with super short hair, or just for not being who I saw myself as.
After treatment, it was so hard for me to integrate back into life. Once it was over, I had nothing to hide behind (being a cancer patient actively in treatment) if I was struggling with something - I felt fragile and was an emotional wreck. I truly shut down at this point. I would have to excuse myself from work, from dance classes, and social events spontaneously and immediately. I lost track of the number of bathroom floors that I sobbed on, the amount of people who I tirelessly attacked with my problems (at times in ways that I regret so much now), because I just didn’t know what to do with the emotions I was feeling and had been bottling up for the duration of my treatment. People were concerned about me, and I was concerned about me, too. It was a really hard six-eight months, I was an absolute train wreck disaster for so many reasons. I didn't like how I looked, I didn't feel right, I had nothing left to hide behind, and I had no excuse—so, why was I slacking? I had beaten cancer and was a healthy 23 year old with no reason to be emotionally exhausting everyone who cared about me, or to be sobbing on floors as regularly as I was.
I ended up eventually thinking, “I need to seek a therapist, and I need to do it now.”I finally gave in and called my doctor to make an appointment with their counseling center. My therapist there has been so great to me, and while I wish I had found the will to seek her out sooner, I am eternally and inexplicably thankful for the impact she has had on my recovery.
I have to go every three months for blood work now and every time I go into the cancer center, I feel like everything I went through was some twisted dream, like it never happened at all. I'll see people walk by and think: can you imagine having to get treatment all the time? And, it dawns on me that yes, I have, I did - that was you. I was talking to my friends about it, saying how there has to be some psychological term for this. "Sure is, Julia. You're dissociating.” was the response I got to that.
I am actually incredibly grateful for a lot of the experiences that I've gained from having cancer. I have become more bold in putting myself out there in terms of my dance and choreography, and even just in life. There isn’t time to waste when it comes to pursuing your dreams, because one day you could think you have chronic fatigue and the next realize that it’s actually your blood trying to kill you. I also learned that I have the greatest, family, friends and teachers that anyone could ask for - I truly could never thank them for how they held me up (figuratively and occasionally literally) through all of this. I have so many great memories of my friends living in my hospital bed, pulling me through the halls by my IV pole, bringing me decorations and necessities for hospital stays without an end date, and countless ridiculous stories. I always try to remind myself that this happening to me affected the people close to me in ways that I could never image either, which makes my even more gracious for how they were there for me even through all of this.
Now, almost two years since my diagnosis, I am finally realizing that who I am right now is okay. I spent so much time harping on the fact that I was not the same person as I was before I was diagnosed with cancer, and trying to get back to the person I was before, mentally, emotionally, and physically. I have finally come to terms with the fact that who I am today is wildly different than who I was in 2017, and it is neither a good thing nor a bad thing. I am a stronger person in many ways, and a weaker person in some, but it’s not something to be compared. It's not that I'm better or worse at being a person, a dancer, a coworker, or a friend, but I have experienced so many things that have shaped me into something vastly different than I could have imagined or expected, and that’s ok. I thought I was going to be a cancer patient for 6-8 months, and then just hop back into my daily routine unchanged - HA! It's okay that all of that happened, and that now I'm a different version of me. It took a really long time to get there, but I'm starting to see it.
I celebrate: the journey. (And all the twists and turns along the way.)
Julia is a dancer, choreographer and teacher. You can follow her journey here.