Friday, December 11, 2015

How many lives do we live in a lifetime?

Nine years ago, today, I wrote my first blog post at My (B)log - forum for my fears, frustrations and exalted successes during my treatment for acute lymphocytic leukemia. Nine years was a lifetime ago, and yet, as many survivors might tell you, there are few sensations like the passage of time after a personal tragedy. Undoubtedly we are living, growing, forging a new path through unfamiliar woods. And yet I can't shake the feeling that I was stuck for so long and have only very recently begun to develop into my adult self.

When you are diagnosed with cancer at age 20, you are robbed of the opportunity to mature in tandem with your peers. You miss out on so many familiar experiences, both positive and negative - college house parties infused with that unmistakable jungle-juice aroma of college student invincibility. Mac and cheese and two-buck Chuck during those few lean post-college years, busting ass at whatever job you have and then closing down the bars that night, celebrating the little bit of independence you've eked out since graduation. Love and mistakes and heartbreak and the mostly inconsequential relationships sparked through Tinder. Finally, a salaried job and the sense that you might finally, maybe, be starting to Make It. Life in your 20s. It is different from any other decade - though I suppose all decades have their own distinct flavor.

This week was my nine-year "Cancerversary," the anniversary of my diagnosis. I have spent the past few weeks pestered by an intermittent pensiveness, occasionally considering where I am and whether this is where I want to be. First and foremost, I am Alive. There: the crux of my internal struggles of self identity and accomplishment. If you are reading this, you, too, are alive. Do you realize what that means, every single day? Do you inhale deeply when you step outside and see the sun rising once more, unbidden, in the east? Most days, I do. Most days, I wake up and am awestruck for a moment that here I am, again. It was only maybe two or three years ago when I realized that I could plan for a future. I had spent years just existing in the present, afraid of more disappointment when my plans would inevitably shatter.

The return of my confidence in myself has been so incremental, so snail's-pace slow that at times I still question what I am missing, what I must be doing wrong. I survived Cancer! I can do Anything! And mostly, I'm pretty sure I can do anything, but that isn't the point. The point is whether or not I am doing the right thing. Not necessarily right in the moral or ethical sense, but what is right for me. I am not so naive as to think this plight is unique to me or to cancer survivors. Most individuals struggle with these questions of self and direction, and I'm sure many people never come to an answer.

My adventures and experiences from the past nine years have taught me strange things, broadly. I have learned that our lives are continuations of days. One leads into the next and the next and that sun will continue to rise no matter what our human selves do to ourselves and each other. I have also learned that our bodies and our souls are more resilient than we tend to give them credit for. My body might be broken, but it will still begrudgingly oblige when I ask it to perform ridiculous feats of athleticism. I have learned that at the end of the day, regardless of friends and family and lovers alike, you have to be at peace with yourself because you are your sole biggest supporter in everything. And this seems like the hardest lesson to put into practice.

We are beautifully, tragically, amazingly human, which classification does not lend itself well to ease of living. Life is difficult. Every day, we are surrounded by struggles - private, public, global. Every once in a while, we assess our own lives and ask ourselves if what we are doing is meaningful, sustainable, worth it. In 10 months I will turn 30. Gasp! I'm so young! And the thought of quitting my stable, stressful corporate job and trekking across Spain keeps rolling around in my brain like a marble whose texture enchants me but I don't really know how to play the game and so don't know what to do with besides roll it around. Confidence in myself and my future self. Toss the damn marble and see where it rolls. I am not fully the adult-Caroline, but nine years after heading down this road, I get to keep growing and breathing and learning that we won't get anywhere exciting without taking some crazy chances. I pray for the confidence and faith to discover what living truly means, for me. 

Friday, March 20, 2015

Survival requires tenacity. And so much more.

I am eight and one-quarter years out from my diagnosis with acute lymphocytic leukemia. By medical standards and definitions, I am "cured." As part of my treatment plan those many years ago, I signed up for a clinical trial that included follow-up for a number of years post-treatment. I don't know how many years they follow us for, but I do know that once a year, I get a phone call from some research assistant at the University of Chicago Comprehensive Cancer Center wherein she asks whether or not I am "still alive?" The first time I received one of those calls, I was flabbergasted. "That's all you want to know?" I queried. But they didn't care about the extensive long-term side effects I was dealing with, just whether the drugs or the cancer or something else had killed me. Maybe the side effect issue is part of another clinical trial I haven't heard about yet.

I haven't really written about cancer in a few years. I actually don't really even think about it all that much. My medical issues have morphed into separate demons, and cancer has become so peripheral that it is almost part of a past life. That isn't to say I don't think about the medical issues because I do. I think about them all the time. I think about them every time I eat a meal or a snack because my stomach gurgles ominously, warning me that in about 15 minutes I'm going to have to find a bathroom. But anyway, over the past week, I have read a few articles that women have written about their own survivorship. One of them, by Suleika Jaouad, you may have already read. She's a celebrity, basically: a strikingly beautiful, young woman who writes about her cancer experiences for The New York Times. I haven't read any of her articles about her life as a twenty-something with leukemia. I didn't want to. But a friend linked to this specific article on Facebook with the caption, "Yes Yes Yes." So, I clicked through. What I read saddened me, more than anything else. She is much more eloquent and honest with herself than I was when I was a year out of treatment. At that time, I still believed I could charge forward with my life, break down walls, inspire others to push through adversity.

My life slowed to an unexpected and drawn-out pause. I lost everything that I once believed I was: driven; motivated by goals; fearless; powerful; confident. Yes, I had a remarkable appreciation for the beauty of living day-to-day, but I also felt there was a significant part of me that wasn't realized. I am grateful for the time I had living at home, and I appreciate so many things about my years at Starbucks and Hyatt. But I wasn't hungry for anything. I was drifting, and it was brutal. It was even worse when I realized that that piece of me was missing, and I had no idea how to either get it back or create it from scratch.

Suleika is barely in her first year post-treatment. Hopefully she will adjust better than I did; she is already heading down her path of recreation. I am seven years post-treatment, and I feel like I am barely getting a handle on my hunger, on my future. That drive is there; that burning in my chest to just Rule the world I inhabit, is Back. I wrote in a post on here, months ago, that there are no absolutes, no black and white situations. Maybe that isn't quite true: You Absolutely Have to believe in yourself. You Have to Want to live and Want to experience everything that this world has to offer. If you hesitate or forget or are dragged from that living river of excitement and emotion, it is its own struggle to find your way back. But we are resilient. We are tenacious. We are all survivors of something, and we are all fighting to find our ways in the world.

It may have taken me longer than some to dive back into myself and what I want from my life, but I am finally beginning to figure it out, once more. And I am not giving up.

Sunday, March 8, 2015

The tortured adventures of a troubled tummy

We take for granted so many things in our daily lives. Breathing normally; living pain-free; walking. Here is another big one: eating. Most people don't think about what they eat. They don't consider how sugars are broken down by enzymes in saliva, that digestion begins before you even take a bite of food. Sometimes food makes a person sick, and that person becomes immediately conscious of what he or she ate, regretting that last chicken wing or week-old soup languishing in the fridge. But generally, food is our friend and we love it.

Recently, in my world, I have been made painfully and frequently aware that an "iron constitution" is a luxury. In about mid-January, my digestion started going goofy. My digestion is always off, so I didn't pay it much mind. But then I traveled to Japan for a ski trip. The food we ate in Japan, on the island of Hokkaido, was amazing and different and so deliciously Japanese. Giant bowls of Ramen; skewers of beef and lamb cooked over a bed of coals directly in front of us; a grilled rice ball, slathered in miso and stuffed with bonito... And quite literally the best fish I have ever had and will probably ever have in my life. We went to one sushi restaurant where the tuna sashimi melted in my mouth. And have you ever tried actual wasabi root? What a crazy experience!

Alas, despite my heart and head loving it, my gut did not approve of all the exotic and international foods I was consuming. During and following our trip, I basically stopped digesting anything properly. My symptoms became progressively worse to the point where I was waking up in the middle of the night with calf cramps so bad my calves were sore for the next few days. That's when I started on the serious electrolyte replacement - it has helped a lot. Don't get dehydrated.

I also realized this: I am lazy. Or jaded or frustrated or over it when it comes to medical issues. But the way I've been feeling, the detrimental effects these GI issues have been having on my body, these things are ridiculous. I want to be able to take eating food for granted again. I want to be able to run for longer than 20 minutes and not be wrecked. I want to be able to ski an entire run without stopping because my lower legs are cramping up again in my boots. So, I am slowly working with a GI doc here, trying to force them to want to figure out why this is happening instead of just prescribing me steroids to "help the inflammation" in my gut.

Ready yourself, here's the moral of this tale: Take Care of Yourself. We are given one life in this incredible world where, for some reason, the sun continues to rise every morning. I can't tell you not to take things for granted, because we all fall into that complacency. But I can implore you not to ignore when something feels off or wrong. We know our bodies better than anyone else, and only we can take the first steps to fixing them. Also, take care of your gut. It is way more important than you probably realize.

I will still be running, even though it isn't as far as I want right now. But I have a crazy trail run scheduled for August and a whole spring and summer full of adventures ahead. It's time to take control of these problems that have been crippling me for so long. Cheers, salud, go live your life and love it! And if you know of a GI doc who is more curious about the cause than the symptoms, let me know.