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.