A Toast to Survivorship

Survivor. For the majority of my life, this word has had a singular meaning. That meaning, of course, was a reality television show that aired prime-time on CBS. Now, as I near my last two weeks of radiation and thus my last two weeks of treatment all together, it acquires a much different and significantly more important meaning to me. For the last seven months, I have been battling for my life. Though that reality never actually hit me while undergoing chemo, its true. For some strange reason, starting from my diagnosis, I never thought of my condition as truly "life-threatening" or even under the scope of "cancer" really. I mean, yes, I understood that I was an oncology patient and I went through the motions of a "cancer patient" and there were moments that I wallowed in the severe isolation of my condition, but even then, there seemed to be something synthetic about it, like it was all simply a bad dream that I was taking far too long to wake up from. In any case, it was real and it most definitely happened and unsurprisingly, I am a new person because of it.

For those whom I have been unable to contact directly, I finished chemotherapy one month ago. There was a slight hiccup in the form of some lung toxicity thanks to one of my chemo drugs, bleomycin, but nothing a little prednisone couldn't resolve. My final PET scan came back with pretty promising results. There was a small area of my initial tumor that was still slightly positive, but not by much. If I may express it in unnecessary medical vernacular- not that these numbers mean anything to most of you- the tumor had a Standard Uptake Value of 2.3 while the surrounding mediastinal blood pool was about 2.0. (For reference, the initial uptake was about 18) In layman's terms: really close. Next step: radiation. I was told early on that I would only need 3 weeks, but after in depth review of my case and risk factors, another week was added for precautionary measures. I had the little mask made and got my little dot tattoos done and I've currently chugged through 2 weeks of my 4 week dose. Lying there for 10 minutes everyday isn't nearly as bad as getting 4 hours worth of chemo and so having an additional week added to my dose didn't really upset me.

I realize its been a while since I've written a blog post, but quite honestly, I've been busy living my life. I finally have stable enough of a white blood count to go to the movies and eat sushi and go to public places. This pleases me immensely - especially the sushi part. The idea of transitioning to being a "cancer survivor" is somewhat daunting but simultaneously exciting. Finally returning to Vassar really excites me especially since the concept of school seemed so far away for so much of treatment. My hair is growing back pretty quickly and quite thickly...although the same cannot be said about my eyebrows...I guess they are just a little shy. I'm working on losing some of my "steroid puffiness" and I'm really enjoying being able to exercise and run and jump and be a teenager again.

Am I scared of what comes next? Sure. Am I scared of a relapse? HELL yes. I think a lot of times people equate beating cancer to beating fear which is definitely untrue, but I do think that facing cancer opens up a receptor to understanding fear and dealing with it instead of running away. Cancer took a lot away from me, but it also brought me a lot too. I became closer with my family, I found ways to express myself, I learned a lot about relating to others, and I found a new academic passion. Jumping from having doctors and family members and friends supporting you 24/7 to being on your own again is definitely daunting, but I am excited to continue on my journey as a newly crowned survivor. I'm a survivor. I get to say that now and not sound like I'm ironically quoting Destiny's Child. Well, here's to whats to come...whatever it may be.

My Best Friends Are All Antacids

Growing up is a funny thing. In the moment, it's every extreme of fantastic, terrible, exhausting, and invigorating. Life happens exceedingly fast but excruciatingly slow simultaneously. Every problem is the end of the world, and each good time is the best thing to have ever happened. Only in time, all the struggles seem so trivial and the warm comfortability of nostalgia fills the holes left behind by fading youth. I'm far too young to already look at photographs of my "younger" self and feel inundated with sentimentality. I may be only 18 years old, but I feel as though I have lived a lifetime.

There is a certain maturity that is required of teenagers and young adults living with a long term illness. Now, most people, particularly adults, see this maturity as a plus; growing up and functioning as a full member of society, aware of the world. Sure, having the emotional maturity to deal with being diagnosed with a blood borne disease is a plus, without it, everyday life would be unbearable. But it also is stealing away my youth. Dealing with the doctor appointments, side effects, and stress during the length of treatment has aged me a great deal. This is the part that isn't fair. I am bald, fat, and I chew Tums like they are candy. I'm excited by being able to walk to the end of the block in the days following chemo. I'm sorry but that is an accomplishment for an 80 year old, not a teenager. I miss having energy. I miss my hair. I miss being smart. I miss being unconcerned with the functionality of my body. Quite frankly, I'm tired of being sick.

I just hope that my illness can be a lesson for myself and the people around me to cherish livelihood. I think it's pretty simply summed up in that quote, "youth is wasted on the young." My hope is to defunct that quote from application to my life and the lives of my loved ones.  Because there's one thing I absolutely know is true; once I've finally kicked HL to the curb, I am enjoying every day of my young, precious life. I'm not wasting any time. I can't wait to be a silly teenager again. For now, I can only coast in my old-fart lifestyle, Tums in hand.

Life in Limbo

In the last two months, I have become a professional waiter. And no, by that I do not mean someone dressed in black slacks and a white button down who takes your order at a restaurant. I mean someone who has their professional career, or in my case, educational career, put on hiatus while their lymphatic system attempts to recreate something resembling the American Civil War. My life has become a progression of widely spaced events buffered by prolonged periods of waiting. Waiting to see doctors, waiting to have blood drawn, waiting for chemo to be administered. Waiting....constantly, essentially rendering my life in limbo. Until today.

Beginning the end of January, I have had two cycles (containing two treatments each) of my beloved chemo regiment, ABVD, administered. Since then, I have waited patiently as my four new friends, adriamycin, bleomycin, vinblastine, and dacarbazine dawned blue uniforms to fight the grey backs of my malignancy. Beside the occasional fatigue and indigestion, I was absolutely unaware of the success of my chemo comrades. Again, I found myself waiting, unsure of whether this poisonous concoction I was allowing into my bloodstream was fighting to preserve my livelihood or allowing enemy infiltration on the home-front. 

After completing the last treatment for cycle number two, it was time to finally reveal the progress of my disease. The anticipation for my PET scan was almost unbearable, but once again, my professional expertise in waiting allowed me to get through it smoothly enough. The next day I received a telegram concerning the troops on the front line (a call from my oncologist with my test results). The mass was shrinking. I was simultaneously relieved and proud of my brave chemo soldiers; and more realistically the miraculous work of the medical community and the individuals who spend their lives researching for the betterment of humanity. This appreciation ignited and fueled in me the realization of a new-found passion. 

Previously, I had never thought that I would, should, or even could be a doctor of any kind. That career option simply never presented itself to me in a realistic manner. But as I spent time researching and reading about the expansiveness of knowledge yet to be discovered in the world of medicine, something in me confirmed the idea that I should at least try to pursue a career in the medical field. There still is not an answer for what causes Hodgkin's lymphoma or a slew of other cancers and diseases and I see no reason why I can't be the person to find out. 

Although I don't have any choice regarding the waiting I must do on the road to remission, I at least have discovered a light at the end of the tunnel. Despite the fact that I currently reside in a limbo state, I will continue to build excitement and prepare for my opportunity to return to school and start on the road to the rest of my life. Until then, I cheer on my little chemo friends and forgive them for making me bald.

Mr. Daimler, I'd Like a Word...

Recently I have come into great conflict with Mercedes-Benz and their pioneer founder, Gottlieb Daimler. Now why you may ask would I be unhappy with a luxury car brand of which I have never been an owner or customer and a 19th century German inventor? Very good question. See, the other day I happened upon the Mercedes-Benz commercial which proudly advertised their famous patron's quote, "The best or nothing at all." Mercedes bragged that this quote, which became integrated into the very fabric of their business philosophy, has pushed them to the very pinnacle of success in the automotive industry. Yes, Mercedes-Benz has managed to be a great success both financially and terms of customer satisfaction, and I applaud them in those endeavors...but are they truly the absolute "BEST" as their great founder once envisioned and demanded they be? Can anyone be the best? Who measures this contest? What are their qualifications? Interestingly, this very quote which Mercedes claims was stated over 120 years ago perpetuates an old-age obsession which only seems to grow with time. Why does being the "best" literally or even metaphorically have any weight in determining the individual success of a company or person? This was when I realized the absolute insanity in living life trying to be "better" than others.

Growing up among very advanced and competitive musicians, it was easy to turn something like music, which is supposed to be an expression of human emotion, into a sport. A bloody sport. Like Mr. Daimler, many orchestra parents and kids saw being the best of the absolute importance, which baffles me. For example, what makes Joshua Bell a better violinist than Hilary Hahn or vice versa? Creating such bloodthirsty competition in something as subjective as the arts seems to be an absolute waste of time, energy, and talent. 

But it doesn't stop there. Human preoccupation with being the best at everything seems to consume our culture. Constantly comparing ourselves through social media; fuming in jealously as you look at other's Facebook photos realizing that your Friday night wasn't nearly as fun as your friend whom you haven't even spoken to in five years. Though a healthy amount of competition drives the economy and technological advances, its control on our outlooks of life is viciously contagious and dangerous. Our obsession with being extraordinary and the "best" can ruin our ability to simply enjoy the pleasures of doing things for the sake of doing them. We attempt to prove to others how much greater our lives are than theirs. I am absolutely guilty of this. As a member of the social media generation, I thrive in self-importance and the idea of exhibiting the best of my life online.  I act as my own editor, showing off the best of the best in order to demonstrate my superiority over others. This is absolutely ridiculous and quite honestly embarrassing, and yet, its endless. 

We even then come into competition with our past selves. Being home alone a lot, I find myself looking back at old photos of myself and friends wishing I was as happy as I appear in the photos, fooling myself into believing that somehow I didn't have problems then. But I must address the fact that that is not true and there's never been a better time in my life than right now. Wasting the time I have now, young and relatively healthy, you know minus the lung tumor part, is silly and I vow to be more appreciative of what is at my expenditure. I have to start looking at having so much free time as an opportunity to grow and enjoy my favorite activities and spending time with family. So although I greatly disagree with Mr. Daimler's frankly petty view of life, I thank him for making me realize the importance of living today for the joy of today. So in that spirit, I vow to be less consumed with trying to be better than people, or appearing to be on Facebook and Instagram. There is no way for me or anyone else to measure the beauty a human life can create everyday and I vow to stop trying. Instead of being depressed over times past or times to come, I rejoice in the truth that every day of my life is the best of day of my life. 

Why

The human instinct to cry in response to overwhelming sadness is one that perplexes me a great deal. In no way does shedding salty tears reverse a tragedy, console those in distress, or better a situation that seems absolutely hopeless. If anything, crying only deepens the chasm of heartbreak and sadness already plaguing its victim. Why then are we as a species programmed to worsen our own states of depression by blubbering like children? Red, patchy skin, puffy eyes, and streams flowing from my eyes. Why has this become my reality every time I lay my head on my pillow?

What I don't understand is how all the strength, determination, and happiness I feel during the day disappears the instant I am left alone to my thoughts. Why do I spend hours thinking of all the experiences I'm missing out on? Why do I feel so left behind and forgotten? Why do I torture myself by replaying every final interaction I had with friends at school  counting the days until I see them again and then wonder if ever? Then I shake that from my consciousness knowing in my heart and mind I will defeat this disease. I will win the civil war raging on inside.

I know better than all this. I know this stems from my ridiculous fears that seem to manifest themselves in nightmares while I'm still awake. I know I have no reason to feel neglected with all the love I know and have established around me. But it still seems to return to the essential question.  Why is this happening to me.

I may have made some negative progress this time but I had to acknowledge that this is actually happening to me. I had to understand that as more and more of my hair comes out, I will get looks from strangers. I had to know that no matter how many times I imagine the reunion with my friends and my life back at school, it will not come any faster. These are all things I know. And if I know all these things, then why am I persistently bothered by why? Why. Why...

"I'm as free as my hair, I am my hair"

Growing up, the closest thing I had to a sister was my cousin, Laura.  Our birthdays were only 5 weeks apart and we spent every holiday and most of our summers together. Throughout our lives, we often were mistaken as actual sisters because of our uncanny physical likeliness; same blue eyes, noses, cheeks, and smile. But one thing always separated us, especially as young children. Hair. Laura had the longest, thickest blonde hair even when we were toddlers. I, however, couldn't grow my stringy wispy hair past my ears no matter how hard I tried.  My bowl hair cut, alongside my father's insistence I wear pants at all times due to my propensity to hang upside down on monkey bars, made me resemble a very cute little boy. Looking at the Barbies that Laura and I shared, I realized that something was definitely wrong with my appearance. From a very young age, I wanted nothing more than the long hair that my cousin adorned. So, I sought advice from aunt, Laura's mother. "Never let your mother cut your hair." From then on, every trip to the hair salon was a battle of insurmountable proportions. Ending in my victory over the stylist's scissors, my hair finally grew long and thick. I was obsessed with styling and playing with long hair. I taught myself intricate braiding techniques and held styling sessions before school dances.

Fast forward fifteen years, faced with my diagnosis and the looming inevitability of hair loss, I decided to cut my hair off and donate it. Initially, this decision was based mostly in practicality; pulling out long strands of hair can be difficult and messy, but over time, I have realized its completely changed my view of beauty and self-image. Having short hair as a woman has had a storied history in negative stereotypes.  Traditional perceptions of feminine beauty is almost always depicted with long flowing locks. As somewhat of a jock in high school and growing up with mostly male friends, I tried to keep my long hair as a reminder and affirmation of my own femininity, always fearful that I would otherwise be depicted as ugly or undesirable. I was always overwhelmed and frightened by the idea of short hair until I finally built up the courage to cut it. Since then, I have never felt more liberated in my life.

When you are diagnosed with a serious illness, your first priority becomes your health and wellness. I had no room to be concerned about my appearance facing the preliminary steps of testing and treatment.  However, as I have become more comfortable and established in my daily routine and treatment schedule, I have come to appreciate the ease and comfort of short hair.  I am no longer concerned with being skinny or adhering to the Barbie doll image that always bothered my subconscious. My definition of beauty has become centered around feeling strong and comfortable physically, mentally, and emotionally. Now as I face the very real possibility of losing all of my hair, I feel a sense of peace about it. The last few days, I have been pulling out hairs strand by strand and although annoying, the loss of my hair doesn't feel as I had initially anticipated. 

I have come to realize that cancer is about loss.  Going into this process I am mourning the loss of a semester of college and the ability to share time with my friends and while I thought that I would be mourning the loss of my beloved hair, cancer has actually given me the feeling of freedom from the emotional attachment I had to my hair. My perceptions of beauty are finally liberated from the external forces that once drove them. While I'll still sign up to French braid anyone's hair, no longer does my hair define me. So I'll have to disagree with Lady Gaga and her song "Hair".  I am NOT my hair.

Two Wrongs Did Make A Right

I am not wrong very often. This is just a fact. So for me to be incorrect twice in such a short time is quite impressive. The first being in reaction to my first chemo. On Wednesday of last week, I hooked up to an IV and waited patiently while a sassy veteran nurse pumped six different drugs into my veins. Despite it taking nearly six hours to complete, I felt great and couldn't believe how easy this process was going to be. This is where I made my first critical error in judgement. Sure enough, at 7:08 pm, just as Alex Trebek was reading the final Jeopardy answer before the commercial break, it hit me. Absolute nausea and headache. That lasted for a solid three days. All the descriptions for nausea read 24 to 72 hours. And guess what. Hour 72 was the very moment at which I began to feel better.

That Sunday was the disaster of a game that was Super Bowl 48. To Peyton Manning and the Broncos, that was sad and your ability to lose so badly in the Super Bowl is truly spectacular (three of the worst Super Bowl losses in history belong to the Broncos). But besides the game were of course the commercials which were actually extremely confusing and out of the box. Except for one. As it opened, I just seemed to know it was going to be about cancer. Perhaps it was the short hair on the woman's head and the sad indie music playing in the background, but it was clear as day to me. At first I was annoyed and quite frankly appalled that a corporation like Chevrolet would stoop as low as to use cancer as a sales technique, but here is my second instance of being wrong. Watching all of my close friends and relatives change their profile pictures purple was one of the most moving things I have ever felt.

My previous experiences with social media were all senseless and unimportant, but this single action changed completely the way I view human communication and interaction. Sure, things like Facebook and Twitter are more often than not used for silly documentation of our privileged lives, but sometimes they are an incredible medium for expressions of love, support, and hope. Because as I've learned, it doesn't matter the way through which we interact and communicate, what matters is that we do. Cancer or any illness for that matter is extremely alienating until you open yourself to the multitude of ways people who love you show their support. Whether it's a parent or brother driving to appointments and treatments, friends 3000 miles away messaging through Facebook, hugs from close family friends, or even a like on Instagram, every interaction is a reminder of the love around me.

So sure, I may have been skeptical of Chevy's intent with integrating a cancer survivor into one of their ads, but I've learned to see beyond the my cold, cynical attitude about consumerism and embrace the message behind it and I'm glad to say that this time, I've never been happier to be wrong.