Sunday, October 23, 2016

Sunday afternoon musings - hopped up on chai and sunshine

What have I been doing these past five months? Clearly, I haven't been writing. I was working and hiking and running and backpacking and wedding-ing (my brothers'), and generally doing lots of things that were not writing. I have also been trying to heal. As I alluded to in my last post, my body was in sorry shape, earlier this year. I went to Italy in January, and on my return, everything seemed to spiral out of control for me, health-wise. I started losing weight because I had chronic diarrhea and extreme fatigue. I was falling asleep at my desk at work and Lord knows I couldn't run. By May, I had met with a naturopath and was trying to not eat grains and not eat sugar and slowly get back into exercise and gradually get over my fatigue.

The thing is, my health seems to operate as one of those Whack-a-Mole games. You can only whack one mole at a time, and as soon as you do, there's another mole waiting to be whacked, and another and another and you inevitably miss one or two and then the game is over and you may or may not have hit enough moles to get a few tickets spat out at you that can be redeemed for something Made in China. But I digress. My gut is healing (*Knock Wood!!). It no longer starts bubbling after every single thing I eat. I have gained five or six pounds, so I'm about back to a normal weight. But the moles: my hemoglobin count is falling.

Yesterday, I went for a pretty stout hike, and the mountain nearly broke me. My generation has embraced the notion of collecting experiences versus things, and we share everything cool with everybody who follows us on social media. Don't get me wrong - I do it too. But yesterday, it occurred to me that if I posted the selfie I took after finally making it to the saddle between the mountains, as the sun was setting and the mountains and the plains were both glowing, if I shared that moment with my social media world, it would be wrong. It would be a pretty picture of me almost on top of a mountain seemingly celebrating four miles and 2,500 feet of vert! Totally badass! And yet, that was one of the most brutal hikes I've ever forced myself through. I did it, but only because I would have felt even worse if I had turned back. But for four miles and 2,500 feet, I couldn't breathe; I felt like I could barely move.

I've come a long way since the end of May, but all the sneaky moles that pop up keep reminding me that I am sailing uncharted waters. None of how I feel is normal, and I haven't yet found any sort of precedent for these sicknesses. But it is all I can do to just keep pushing onwards and upwards. Even if I have to take a break to let my heart rate chill out every few minutes; even if I have to remind myself to drink water and stay fueled. I am not ready to turn around or just quit because if I have learned one thing from my years here, the view from up high is Always worth it.

Here's to another five months of living!!

Tuesday, May 31, 2016

A long time coming

I have halfheartedly sat down to write an update on here a number of times over the past few months. Something always comes up to keep me from finishing more than a paragraph. I'm braindead after work; The Voice is back on; the sheer bulk of thoughts and experiences I want to share is overwhelming. How on earth will I condense everything into one post when there's so much I need to get out onto the Internet? But for the sake of my sanity and hopefully to help someone else out there, I am committing to starting to write again. I realize that not every post needs to reveal some epic, thought-provoking "Come to Jesus" moment, though I am certainly working through plenty of those. In writing for a public forum though, I think the most important part is to stay focused and stay true to your purpose. For a long time, I had an easily defined purpose - to share my cancer journey. My cancer journey is no longer the focal point of my life (thank goodness), but my experiences as a survivor, I think, constitute a decent reason to keep writing publicly.

Here's my plan, and here's why: I'm going to keep writing, and I am going to keep writing about my survival. I hereby dedicate my blog to writing about running and hiking and living as much of my life outdoors as I can, despite the fact that my body is close to the edge of wrecked. We have all survived something, and the most thrilling part about it is that we continue to survive and get to enjoy this phenomenal world in which we live!

Cancer destroyed my body's secondary immune system. My blood can no longer produce a specific type of b-cells, immunoglobulins. Various doctors and specialists ranging from immunologists to gastroenterologists to the naturopath I'm currently seeing have all tested my blood extensively to determine the extent of my deficiency. They all agree: I don't make any immuoglobulins. Diagnosis? Hypogammaglobulinemia. Gezundheit. This, they agree on, once each has run the exact same test and seen the exact same results. After which point, their agreement ends. It's pretty amazing and strangely universal in Western medicine - medical tunnel vision. "I specialize in this one thing and so will treat the symptoms you are experiencing for this one thing." So, the immunologist monitors the immunoglobulin replacement therapy I receive at home, monthly. And the GI guy monitors the steroids he prescribed for "nonspecific inflammation" of the intestinal system. And my new naturopath is at least looking at my entire system and trying to figure out why my liver enzymes are elevated while my blood glucose levels are totally normal and my cortisol levels are off the charts and in the meantime, I just desperately want to stop pooping everything out of me that I put into me. More than that, I want to run a full trail marathon in Moab in November, and I'm genuinely not sure my body can pull it off. 

With all of that on my mind, I'm going to write for other people to read about it! In case you've ever wondered what it's like to dive into the GAPS diet and try to consume little to few carbohydrates while training for a summer's worth of backpacking with a potential trail marathon cherry on top, this is the spot for you! There's no way I'll be able to write daily, but I commit to a bit more regularity. How's that for just vague enough?

This will be exciting. Hopefully, it will be cathartic. Even more hopefully, at the end of this grand experiment, my gut will have healed more and my True Health will be back and here to stay. Thanks in advance for your support and for your patronage!!

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.

Monday, November 24, 2014

Gratitude Circle

Eight and a half months ago, I found myself wearing slacks, a blazer and office-appropriate footwear and entering a building built to accommodate 950 workers, 98% of whom have direct access to natural light. The building is LEED Gold certified; there are a lot of windows. Eight and a half months ago, I took a calculated risk and accepted a position at a company that sounded cool; it seemed like this company made a legitimate difference in the lives of others. The position - an internship - came with no guarantee of full-time employment at the end of six months, and it paid less than what I made as a barista. (Side note: barista-ing was never supposed to be long-term for me. I reluctantly allowed it to turn into a medium-term thing that served as a band-aid for my somewhat directionless mid-twenties.) So, I quit barista-ing, spent two months skiing and looking for a job, took Anatomy & Physiology I, and was offered this intern gig. I had no idea what I was getting myself into, and I knew very little about the company where I was about to begin my first sort of official 9-5 something or other.

And yet I took that leap and began a combined Communications/Corporate Social Responsibility internship with DaVita HealthCare Partners because thank Godness an employee on the Communications team thought I was worth their risk, experience be damned.

It is now three days before Thanksgiving, and this morning, we held a gratitude circle in my Monday morning homeroom meeting. Everyone sitting around the table expressed their gratitude for something in their world. "My health;" "my growing family;" "Colorado..." The energy in the room shifted. It changed from "Ugh, Monday morning meeting ugh," to something more positive, more reaffirming. What struck me the most was that all of the individuals in the room and on the phone said they were grateful they worked for this company, that they were a part of this team. I have never seen or been a part of such positivity in a work environment. I forgot to mention that this Gratitude Circle was actually a directive from our CEO, an instruction that every team around the country take some time during their Monday morning meeting this week to reflect on what they were grateful for in their lives. I told you this company sounded cool.

This year has been an absolute whirlwind of emotions and uncertainty and self-doubt and self-confidence and pretty much everything else that could happen short of popping out a baby. There's actually very little likelihood of that happening. But in all seriousness, as of November 10, eight months to the day of my walking into that beautiful, sunny, happy building as an intern, I am officially a full-time employee at DaVita. My position is incredible - I get to work with nonprofits across Denver and coordinate volunteer opportunities and design sponsorships and attend a huge variety of events that celebrate philanthropy in Denver and Colorado.

I am grateful. I am beyond grateful that I am still alive, still kicking and screaming and running and here to greet the Colorado mountains every single morning. That gratitude has been a part of me for a long time, and I know I will never lose it. But I am grateful, now, for this job and this opportunity to grow. I am shocked and awed that it has worked out like this - I work for a healthcare company while serving the nonprofit community in Denver. How freaking sweet is that?

The past eight years of my life have taken me down some crazy paths. It is not possible to predict where your choices will lead you or how certain decisions will shape your future paths and future self. I really have learned, though, that there is nothing more important than being grateful for at least something at any given point in time. Life's circumstances will necessarily change and shift and move in all sorts of unpredictable ways, but it is so important to recognize that there is always something to be grateful about.

I am grateful for life and for right now and for where I came from and wherever tomorrow takes me. How about you; what would you say in a gratitude circle, today?

Tuesday, February 4, 2014

Turn up the bass

When last did you do something with utter abandon?  Anything!  Run, play, laugh, cry, love with abandon?  Danced like you're wearing jazz pants from eighth grade and you're home alone and what do you care if you're bothering the neighbors?  You're just dancing, hair flying all around, spinning chaînés around the chairs and tables in the living room and then the beat drops and you drop into a split you can still just about do...  When I was a kid and into highschool, I used to dance around in my bedroom, utterly uninhibited.  Mostly, I'd just practice pirouettes and the splits and whatever I could fit into my small, square room.  But I would dance so hard - I can remember collapsing into my giant green papasan chair, out of breath and laughing and loving the fact that my body moves like that, can move to music and for a few brief minutes, absolutely nothing else matters.

I was never a great dancer; I was always a little chunky and off-balance.  I loved ballet, envied the grace and ethereal beauty of prima ballerinas, such that I even danced en pointe in high school.  But I was better at jazz and lyrical, and my favorite was jazz a la Bob Fosse: sexy, deliberate, each movement loaded with meaning and feeling.  More of my personality came through when I was onstage than perhaps when I wasn't.

And then what?  Life changed everything, took me in an utterly unimaginable different direction.  I haven't danced with any instruction in over seven years, haven't danced on a stage in almost nine.  I'm not even that old!  How does one's life change so abruptly that everything you thought made you "You" just fades away?

Perhaps, though, that isn't quite true, either.  I no longer perform, but that doesn't mean I don't still want to.  I am less goofy but more joyful.  And tonight, dancing by myself in my living room, I was reminded just how amazing it feels to let go.

Life should be less about the things that stress us out, the daily wear and tear that brings us down.  Jobs, the weather, our relationships or lack thereof - we put so much emphasis on certain things and expect them to fulfill us.  Shouldn't life be more about dancing and laughing and enjoying the moments you have with people you love?  I think so, and I am going to try and embrace that sentiment once more, and dance, once more.  So, please, go blast your music and let your endorphins and inner child dance freely for a few minutes.  And have fun!