I woke up a few days ago and realised, slightly shocked, that it's December. Somehow, with me being so involved with my day-by-day existence, I lost track of the bigger picture of time.
I had completely missed fall sneaking past me and now here we are, sprinting towards the end of 2017. Along with that overwhelming sensation of how fast this year has flown by comes this unexpected feeling of accomplishment.
I wasn't supposed to be here. Not only was I not supposed to be outside of the hospital in my Berlin apartment, living without my parents, managing my life happy and well - I was not supposed to be existing at all around this point, not according to my first diagnosis and statement by my physician: Six - Nine weeks.
That's not even the length of a college semester, it's shorter than a season and less time than summer break.
To still be alive is a beautiful miracle, but to be living is so much more than that.
There have been days I've not felt so lucky. I've kept a straight face while hearing over and over again how limited my existence is, cried in the shower more often than I'd like to admit, pushed friends and family away, been impatient with my body and worst of all, questioned my purpose.
And yet, lucky for me, these bad days did teach me that strength is not defined by the absence of weakness, but by conquering it. Or in other words, your courage does not come from a lack of fear, but through acknowledging and facing them.
I have fears and I have nightmares and I'm in pain, but so far I've always managed to pick up my pieces and rebuild myself. I apologise, I forgive, I let go and I heal. And then I break again, but it's never beyond repair and so the cycle continues and hopefully within every battle I become a stronger and braver me.
2017 was a heavy year to carry and whenever I feel close to becoming overwhelmed by the amount of change and I start thinking of the hours I spend fighting, running, collapsing and getting back up again, I remember this list I made to remind myself of how far I've come:
62 h chemo
54 days spent in hospital
150 h spent in waiting room
108 h spent driving (thank you mom and Aeneas)
103 shots (not including the insulin shots)
29 days spent in wheelchair
11 inspirational cancer fighters/survivors
1 love story
uncountable acts of kindness, encouragement and love
This list sums up my year. It doesn't capture the amount of tears, heartache and stress that go along with this new life, but it's a good reminder that for everything that decays, something beautiful grows back in its place. Cancer will take and take and take again, but I can also let it give.
With all the bad that comes my way, there is always good that follows it.
Wounds can heal.
My body hurts and will rest,
my heart breaks and will mend itself.
As my lovely Rupi Kaur so beautifully writes:
So with all these lessons I'm learning the one that I was reminded of today, by writing this down, is that my initial statement was wrong. I am supposed to be here. No matter what the diagnosis or the physicians predicted. I knew I would be here.
My birthday is coming up. I'll be turning 23 on June 1st, which means I've been living at home for the past six months. It will be nearly half a year since my diagnosis.
The other day I went through pictures on my phone and skimmed all the way back to May 2016. On May 28th I took a picture with a friend on our way back from Revere Beach, sun-kissed and oh-so carefree. A year later: it's just as sunny, I'm longing for a beach - but now I'm stuck in bed two days after chemo and feeling nauseous and weak.
On April 11th 2016 I saw Rihanna perform at TD Garden. 365 days later I was waiting for my CT results at the Heidelberg Thorax Clinic, my heart beating 120 beats per minute, exhausted from sleep deprivation and trying to cope with an aching mind and body.
As a naturally flexible person I have adapted fairly smoothly to this new life, even let go of past expectations. Apart from the slightest bittersweet ache I felt once seeing the graduation pictures on my friends Facebook pages, I've closed the chapter of my life at Berklee and as a young professional, for now.
It can be overwhelming at times to recognize that most of the things we hold on to for support are so unstable and quite frankly, irrelevant. A year ago my time and energy was mostly invested in my education and career. Both of which have no place in my life now. If these things can change or disappear entirely within a blink of an eye, then they cant be the engine that keeps me running.
I recently spoke with a friend and he told me that when I come up in conversation he tells people that I live at home and doesn't mention why. At first I was put off by that. I felt like I needed to validate myself to these people and explain why I was living at home, and why I'm not in school or working. His response to that was:
"I tell them about all the things you are. I don't need to tell them what you do. Whether you're living at home and figuring things out, or you're working in Boston, none of those things make you the person you are. You were strong before anything else ever happened."
His words made so much sense it almost surprised me that I needed reminding. Cancer didn't make me strong. I was strong as little girl, riding a bike up a hill, refusing to get off until I'd reached the top. College didn't make me dedicated, I was passionate even before I learned how to play music - music just became one of the outlets. I am my engine, I am my drive and in the end that is what will remain, no matter where this journey takes me.
I don't wish to disregard the importance or value of college or building a career. I also don't regret any of the time and energy I spent there. I've just adjusted my perspective and to what extent they matter to me in the time that I'm given to make myself and those I love happy.
When facing your own mortality on a daily basis you ask yourself what you want people to remember you as and what you want to leave behind. I'd like to leave the people I care about filled to the rim with all the love I can grow during my precious time here.
There's a very lovely poem by Rupi Kaur that sums up my feelings on this topic perfectly.
“most importantly love
like it's the only thing you know how
at the end of the day all this
where you're sitting
nothing even matters
except love and human connection
who you loved
and how deeply you loved them
how you touched the people around you
and how much you gave them”
I will never stop learning, even if I don't go back to school and eventually I might even become a functioning part of society again and be able to work a job. However, it wont be my purpose and it definitely wont define the person I was from the very beginning.
I have a very strong memory of my father telling me this story about Moses Mendelssohn, a hunch back who was in love with this beautiful woman and wanted to marry her.
I don't remember all the details, but she ended up saying yes - against all expectations - because the hunch back told her that the reason he looked the way he did was because he asked God to give him this face and body so that his love wouldn't have to carry such burdens.
He was certain he'd be able to handle this challenge and didn't wish it on anyone else.
The story had quite an impact on me as a child and it defined the concept of love for me for the first time. As far as I was concerned love meant keeping others out of harms way even if it left you with a hunched back.
When I was first diagnosed a lot of people told me "you're the last person who should have to deal with this" and I couldn't help thinking they were absolutely mistaken.
We all shine during different moments in life and show our true strength in different situations and we're not all built to withstand the same types of pressure.
My body and mind perform best when the stakes are high. I shine in crucial moments and I remain calm when my well being is at stake.
I'm weakest when the people I love and care about are in pain. To me, my friends and family are the brave ones. They have to let go, trust me and take my words for granted that I'll be fine.
All they can do is stand by, wait and make the journey less lonely.
I would be miserable in that position. My mind would never be at rest and my body would fail me.
So it makes perfect sense to me why I was handed this card and why my friends and family are here to accompany me during this time. We can get the most out of this situation taking on the roles we were given. I'd probably suffer harder if I had to watch someone I love fight this battle.
Lung cancer tried to derail my life and so much has changed in so little time, but I've landed on my feet and feel like I have the best ammunition to fight back.
Since my diagnosis in January I've finished my first Chemo cycle, moved back home, seen old friends, made music and art, travelled through Germany and have started every morning with a sense of purpose and meaning.
Bottom line: I'm doing ok.
And I'd like to think that I'm ok because I chose to take on this burden in order to keep someone I love from having to fight this battle.
My favorite moments during my days at the Heidelberg Clinic are when I go down to the lobby with my mom and sit at a little table by the window with my sketchbook. She talks to me about what's on her mind and I sketch and listen occasionally adding my advise or opinion.
I'm not a very good painter and I always struggled in art class. However, I always considered it one of my strong interests and passions and over the years I've developed a very therapeutic relationship with it. During stressful times in college and challenging times with my health in the past I've used music and visual art as a strong outlet. It always puts me in a very specific mental place that is a combination of utter mindfulness and trance. I am 100% present, but not in the here and now that I was before. The context is different. My thoughts become transparent and my surroundings become irrelevant.
So it was no surprise that my friends immediately purchased a sketchbook and coloring pencils for me when they came to visit and now I spend a little bit every day in a reality that is very much related to the present and yet holds a different existence for me.
Cancer is not a definitive heavy state of being during those moments - it becomes art. I can paint it, I can give it colors and forms and I can change my relationship to it entirely. My tumor isn't a mysterious cell group trying to take over my body, but a flower that has died and I can tear from its roots. Chemo isn't a poison flowing through my veins killing good and evil equally, but a vine growing through my body spreading fruit and new life. I can change the dialogue with my disease entirely in those moments which is why creating art has become so important for my mental wellbeing. It's a constant positive reinforcement that I can actually see and control.
Control might be the key word to pinpoint my dedication to this habit. In art I am the creator and I control the fate of the painting and how it's supposed to make me feel, which is exactly what I crave when facing cancer; to take back some form of control.
If I can create a space (even if it's only a creative space) in which I can change the context of my cancer and reinforce a positive relationship with my body, then I am actively battling my condition and sending myself consistent messages of self-healing.
It's no secret that your body changes while battling cancer. I've only started this battle two weeks ago and I'm already noticing subtle changes. The side effects of Chemo have yet to hit me and yet I'm already aware of my body's growing fragility.
Despite the differences I've been feeling and seeing on the outside, there's the one crucial inner change that started this entire journey for me and sparked the biggest question for myself.
"Where did the Gene-mutation come from?"
It's the hardest question to ask because there is no answer, and it's the most frustrating question to ask because it offers no condolence and no blame. There might be answers years from now, but as of now I'm one of the 1-2% of lung cancer patients who have this mutated gene and there was nothing in my power I could have done to keep this from happening.
A psycho-oncologist came to speak to me during my first day at the clinic and after listening to me describe my situation for a little she asked me, not hiding her confusion,
"So you're not disappointed in your body?"
That thought had never occurred to me before. The idea that I would be disappointed in my own being, blaming it for this fate, seemed completely far-fetched and irrational to me.
The relationship I've had with my body has been tense at times and I've pushed my limits more than I'd like to admit. However, over the years of already living with a chronic illness and now especially after my recent diagnosis I've taken on a very nourishing, almost motherlike attitude towards my body.
Now more than ever my body needs to be cared for and handled with love and sensitivity. There is no room for blame and there is no space for disappointment. If I want to move forward I will have to keep my body and my mind safe and reassure it every day that I will take care of them. I will love every inch of my body, every fiber, every cell that I'm made of and I will promise myself, I will be safe again, in time.
The trick to not getting lost in the world of cancer and all its potential outcomes, is to take on no more than 24 hours at a time. Once I got to Heidelberg we discussed a long-term game plan.
I understood the concept of what the Doctors were planning and I knew why we were going over every worst case scenario in the book. However, by the end of the meeting all I asked was
"Is there a chance we can make this work?"
and they said there was.
It doesn't matter how small the chance is, how depressing the statistics, once you know what you're dealing with, all the numbers and facts become secondary to the power of the individual.
And so I've set up my 24 hour game plan and learned to celebrate small victories. My heart is working fine, there are no signs of metastasis in my brain, liver and ovaries, and my blood sugar levels are stabile.
I can find something everyday to add to the list of little victories, even if it's something as banal as finishing a meal or going to a CT appointment without a wheel chair. On the day of the Women's March I got out of bed (for the first time in a while) and my mom and I walked down the hallway of my station four times. It was one of my bigger accomplishments that day to slowly move forward, despite the pain, next to my mom. She and I joined, in our very special way, the Walk for Women.
In addition to my 24 hour rule I also focus on non medical related goals in the future. I picture seeing every close friend of mine again in very specific settings. I think about going salsa dancing, sitting wrapped up together with my sister on her couch (she knows I'll never let go of her again), playing soccer with the kids I used to nanny in Boston, being able to fully sing again (my air supply is slightly low which makes my singing sound more like an airy speaking voice) and rediscovering my independence. Those who know me, are very aware of my need to self sustain and indulge myself with solitude. When I became a full-time patient I had to immediately give up on making choices on my own and experiencing privacy. Technically it's a small price to pay in the grand scheme of things and I've become quite a natural at crying, laughing and undressing in front of my audience of nurses and doctors.
My Chemo started yesterday night. It's done, and even though I'm aware of the side effects of this treatment I don't need to think about them until I've reached those next 24 hours.
So as of now my recipe for a peace of mind during this cancer period of my life is the 24 hour rule combined with a daily dose of futuristic thinking, just to make sure I can sleep with slightest hint of a smile on my face.
I had plans for 2017. When the new year hit I had my glass raised, was surrounded by friends and was doing what I do best. Dancing with the care-free attitude of someone who is utterly fueled by endless possibilities to create, and convinced that great things were right ahead.
Unfortunately life had other plans for me.
When I read the report on my lung x-ray I stayed surprisingly detached. The diagnosis seemed completely out of place and unrealistic. Up until flying home for Christmas I was working full-time, going to college, and leading a very exhilarating social life. There were no signs of a person whose body was being compromised by an invisible enemy.
This seemed to be the general opinion of the Doctors who compared my physique to the x-ray image and so everyone was convinced that the big shadow on my lung and the snowflake-like dots had to be anything but a tumor.
The biopsy proved us all wrong and when the Doctor spoke to me one-on-one about the seriousness of my situation and the choices I'd have to make, I watched everything in my life suddenly unhinge. I felt like I'd been reading a book about my life and suddenly turned the page to this completely unrelated story where nobodies' roles made sense anymore and the entire premise morphed.
The interesting thing however, was that despite the initial horror of having my new reality sink in, I felt myself adapt almost seamlessly to the new story I was suddenly reading. Perhaps it's some form of self-preservation or a coping mechanism, but I slipped on this outfit of someone whose story line was to be diagnosed with cancer and who was going to beat it.
It's been almost a week since my diagnosis and I am happy to say that some constants of my previous reality remain. My family who loves me fiercely is with me every step of the way and my friends have shown me again and again how much they are willing to help me carry this new load. Also, I am recognizing that my relationship with music is still alive and well and stronger than before. I feel like I have the best support system I could possibly ask for and am perfectly equipped to finish this story as it was intended to end.