Sometime in November, after my doctor suggested trying to avoid the immunoglobulin infusions, I realized that if I wanted to stay truly healthy, I would have to reroute my thinking and some of my habits. My focus became a broader Wellness that included lifting and running shorter distances, and a much more pointed focus on nutrition: more vegetables; a greater variety of vegetables; sleep; water; tea... Basically a shift to a sustainable lifestyle that would keep me healthy.
Last time I wrote, I was a few days away from my chem final and my quarterly PET scan. I ended up with an A in my class and a clear scan. Hooray! I also found out that after six weeks, my immunoglobulin levels had fallen to nearly undetectable levels. Boo! Most doctors are funny in that they don't believe something until they have tested and proved or disproved it themselves. Not one doctor over the past three years has believed my Ig levels could be as low as they are until they test them themselves and are appropriately shocked that, Yes, I am still here. Without those globulins. Needless to say, a few days later, I received an IgG infusion, which did help with how I was feeling.
As a brand new year gets underway, I have been reflecting on this last year and what I want from 2013. 2012 went by lightning-fast, and I am still trying to process everything that happened. Between learning the ins and outs of a new relationship, innumerable hospital visits, figuring out how to change my diet and lifestyle following a celiac diagnosis, marathons, hikes, travel adventures, Burning Man, going back to school, and a sense of incredulity that This is really my life?! Every month, almost every week, brought me some new reason to wake up with a smile on my face. I truly believe that it doesn't matter much what happens in your life. It is most important how you approach the challenges and appreciate the good moments.
Disclaimer: I used to be a raging pessimist and cynic. I had very low self-confidence and little appreciation for everything I am capable of accomplishing. Having cancer did little for my confidence. It doesn't help a 20-year old to lose her hair, her strength, to see her weight fluctuate an incredible amount. Yet, everything that has come my way since 2006 has only made me so much stronger. The immune issue and now the celiac issue both tried to once more take away my physical strength and confidence. I chose to laugh (after a little crying and self-pity) and start baking delicious cookies and muffins full of nutrients and non-gluteny grains that could only help my body. My poor body has gone through so much these past six years, and thankfully my attitude and perspective have changed almost as much.
So on New Year's Eve, I sat at home with a gluten free pizza, a movie, and time to reflect on what I want from this next year. I wrote down a whole bunch of things, some fantastic, most definitely within my reach. Not resolutions, but a loose map of where and how I want to find myself this time next year. I fell asleep shortly after midnight, mostly satisfied. I woke up a few hours later for work and realized that everything I had written down is wonderful, good ideas, nice to set goals, but I really only want one thing: I want myself and my friends and family to stay healthy this year. School, work, travel, running, all of it will fall into place if I can make it happen, but it will all only matter if I am healthy. If I have the energy to do everything, the strength to carry my bike all over the place, to study and work and dance around my living room and love as much as I am able, then it will be a Great year.
The best part is, to an extent, this is all within my control. I've been reading a lot about immunity and self-care through nutrition. I'm not sure how well it all applies to someone with a super compromised immune system (globulins! *still shaking fist), but it certainly won't hurt anything. So to bring this (probably unnecessarily) long post to a close: Wellness. I haven't run in about 3 weeks due to finals and then family in town and then I crashed on my bike and my knee has been out of commission. I haven't gone grocery shopping recently and my supply of vegetables is basically nil. While delicious, cereal for breakfast And dinner does nothing for my immunity. I am hitting up the store shortly, and while my knee is still busted, I'm stretching and doing push-ups and planks and dreaming about the day I can start running again. Even if I will once more be starting at ground zero. This is my life and my body and my health. I've come too far to throw in the towel now, so why not make the effort to truly take care of myself? Like I said, if I can do that successfully, everything else will happen as it should.
And finally, a challenge! I challenge you to figure out what is best for yourself this new year. Is it eating more leafy greens? Making time for breakfast? Doing yoga or giving yourself at least five minutes every day to sit, clear your brain, and think about Nothing, just let go for a few minutes? Figure out something sustainable that will ultimately make your life a little better, grow your confidence a little more, keep you healthier. Let's do it together! I think resolutions are stupid, hyped expectations that generally lead to guilt-induced bingeing. Make a long-term plan, plot out a change that can only improve yours and others' lives. I, again, am shooting for a plant-based diet with the occasional bacon strip thrown in. Less (no...?) refined sugar, more sleep, moderated and consistent exercise. Climbing mountains! Live this life, full of love and gratitude - share it with others. Thank you, 2012, for everything you brought me. Here's to 2013 and a whole new slew of adventures, challenges and growth! Cheers!
Friday, January 4, 2013
Tuesday, December 11, 2012
Happy Tuesday, once again!
Breakfast: kale/spinach/tomato/basil and goat cheese omelet, iced mate with honey. Woke up this morning to (finally!) a sprinkling of sparkling snow and the tantalizing prospect of maybe eventually beginning studying for a final exam on Thursday instead of using my day off to escape to the snowy mountains. Ah, to be a busy, working adult/student in Colorado in the winter. Oh well, soon enough there will be lots more snow and many more days to ski. Meanwhile, I need to pass my chem exam.
I also woke up with sore abs. What? you ask. Don't sore abs require some sort of activity to actually work those abs? Well, yes! Since I updated last week, I have run four more times and twice done lift-y things at the gym, including incline sit-ups, hence the sore lower abs. I have decided to try something just slightly different. Instead of running with the intention of gradually increasing my mileage for some long-distance race, I am focusing on a broader goal: strength and a solid base fitness level. I have only been running between 2.5 and 3 miles, which is actually working out pretty well.
Here is a fun update: it has been six weeks since I last received IVIg. (Immune-replacement therapy I'd been receiving since June 2011. The chemo sapped my body's ability to produce its own secondary immune response). I wasn't making my own immunoglobulins, so my doctor out here determined it was in my best interest to receive an infusion of someone else's immunoglobulins every three weeks. Okay, fine, good, I stopped having chronic sinus infections, slept through the night, changed my diet, stopped having debilitating intestinal issues, blah blah. And then, six weeks ago, I transferred my care from the children's hospital I had been going to to the adult hospital across the street. The adult hematologist/oncologist I met with six weeks ago had a different plan for me. He wanted me to NOT receive the immune therapy every three weeks, reasoning that it isn't necessarily that healthy to so frequently receive blood products. Are they really doing all that much for me, anyway? I have this long-term goal to eventually be off all medications and hospital infusions (including IVIg!). So, while acknowledging my trepidation of just letting my immune system slowly get worse concurrently with flu season, I agreed to pause the IVIg and see what happens with the directive to contact my doctor Immediately if I started feeling sick or if any of my old symptoms came back.
Like I said, it has now been six weeks, and honestly, I haven't felt great, but I also haven't fallen deathly ill (or gotten sick at all, actually). I go back in on Thursday for another PET scan, labs and a follow-up with my adult doctor. I am interested to see where my IgG levels are - higher, lower, how much lower... But anyway, the point of all this: with no external help for my immune system and a massive reluctance on my part to rely on any antibiotics, I am focusing heavily on shoring up my body and my immunity naturally and nutritionally. I am going back to school for nutrition to gain some credibility so I can help others do this very thing, but I am still going to start with myself and start now. So, while I would love to train for another marathon, I know that running those distances throughout winter is not the smartest choice for my body. Much more important is to focus on overall health - shorter running distances, strength training, perhaps yoga... Skiing!
And, of course, food. I would really like to add more vegetables to my diet. Comparatively, I already eat pretty well. (see: breakfast!) But there is so much room for improvement, so many things to learn about nutrition and immunity and incorporating it all into a sustainable lifestyle. I still have a sweet tooth; that isn't going away. I love baking and am having a blast learning how to make healthy, gluten-free snacks. (Side story: my roommate last night mentioned he tried a piece of the coffee cake I made the other day. "Is it really gluten free?" "Yup, sure is." "It doesn't even taste like it! It's really good." Sweet. I love when that happens.) I have also found I have trouble fueling myself adequately if I run any longer than half an hour. For some reason, my metabolism has skyrocketed, and the last thing I need is to lose any more weight. As winter sets in here in Denver, other people can go ahead and get sick, but I will not be one of them. I have too many more important things to worry about than viruses and bacteria. Letting go of stress, maintaining a healthy weight, running, eating super well, and listening closely to my body.
We would all be a little bit better off if we ate more kale. As the holidays progress, I just hope you can figure out a way to relax and take care of yourself. Throw some garlic and spinach into your morning omelet! Make an effort to drink more tea and less coffee (less, not none...). I'm going to eliminate sugary beverages to make room for delicious homemade baked goods. Hooray, here's to your health. :)
Running just a little more, breathing deeply.
I also woke up with sore abs. What? you ask. Don't sore abs require some sort of activity to actually work those abs? Well, yes! Since I updated last week, I have run four more times and twice done lift-y things at the gym, including incline sit-ups, hence the sore lower abs. I have decided to try something just slightly different. Instead of running with the intention of gradually increasing my mileage for some long-distance race, I am focusing on a broader goal: strength and a solid base fitness level. I have only been running between 2.5 and 3 miles, which is actually working out pretty well.
Here is a fun update: it has been six weeks since I last received IVIg. (Immune-replacement therapy I'd been receiving since June 2011. The chemo sapped my body's ability to produce its own secondary immune response). I wasn't making my own immunoglobulins, so my doctor out here determined it was in my best interest to receive an infusion of someone else's immunoglobulins every three weeks. Okay, fine, good, I stopped having chronic sinus infections, slept through the night, changed my diet, stopped having debilitating intestinal issues, blah blah. And then, six weeks ago, I transferred my care from the children's hospital I had been going to to the adult hospital across the street. The adult hematologist/oncologist I met with six weeks ago had a different plan for me. He wanted me to NOT receive the immune therapy every three weeks, reasoning that it isn't necessarily that healthy to so frequently receive blood products. Are they really doing all that much for me, anyway? I have this long-term goal to eventually be off all medications and hospital infusions (including IVIg!). So, while acknowledging my trepidation of just letting my immune system slowly get worse concurrently with flu season, I agreed to pause the IVIg and see what happens with the directive to contact my doctor Immediately if I started feeling sick or if any of my old symptoms came back.
Like I said, it has now been six weeks, and honestly, I haven't felt great, but I also haven't fallen deathly ill (or gotten sick at all, actually). I go back in on Thursday for another PET scan, labs and a follow-up with my adult doctor. I am interested to see where my IgG levels are - higher, lower, how much lower... But anyway, the point of all this: with no external help for my immune system and a massive reluctance on my part to rely on any antibiotics, I am focusing heavily on shoring up my body and my immunity naturally and nutritionally. I am going back to school for nutrition to gain some credibility so I can help others do this very thing, but I am still going to start with myself and start now. So, while I would love to train for another marathon, I know that running those distances throughout winter is not the smartest choice for my body. Much more important is to focus on overall health - shorter running distances, strength training, perhaps yoga... Skiing!
And, of course, food. I would really like to add more vegetables to my diet. Comparatively, I already eat pretty well. (see: breakfast!) But there is so much room for improvement, so many things to learn about nutrition and immunity and incorporating it all into a sustainable lifestyle. I still have a sweet tooth; that isn't going away. I love baking and am having a blast learning how to make healthy, gluten-free snacks. (Side story: my roommate last night mentioned he tried a piece of the coffee cake I made the other day. "Is it really gluten free?" "Yup, sure is." "It doesn't even taste like it! It's really good." Sweet. I love when that happens.) I have also found I have trouble fueling myself adequately if I run any longer than half an hour. For some reason, my metabolism has skyrocketed, and the last thing I need is to lose any more weight. As winter sets in here in Denver, other people can go ahead and get sick, but I will not be one of them. I have too many more important things to worry about than viruses and bacteria. Letting go of stress, maintaining a healthy weight, running, eating super well, and listening closely to my body.
We would all be a little bit better off if we ate more kale. As the holidays progress, I just hope you can figure out a way to relax and take care of yourself. Throw some garlic and spinach into your morning omelet! Make an effort to drink more tea and less coffee (less, not none...). I'm going to eliminate sugary beverages to make room for delicious homemade baked goods. Hooray, here's to your health. :)
Running just a little more, breathing deeply.
Tuesday, December 4, 2012
It is a Tuesday
Which means: jazz on the radio, garlic and rosemary sockeye, white sweet potato roasties, and, now, organic hot chocolate. There is a mini Christmas tree glowing in the fireplace-space of my apartment, nestled beneath a large glass jar stuffed with some more glowey Christmas lights. You cannot have too many Christmas lights glowing all around. Standing in the corner, right next to my jam-packed bookshelf, are a pair of lime green and black and orange (?!) crazy, ridiculous powder skis that, every time I look at them, make me think of my crazy, ridiculous boyfriend powder skier. (I look at those skis a lot.) There is a 1950s-era fully functional record player across the room, hanging out beneath our vintage disco ball. It's time to bust out the Beach Boys Christmas album! which we do have.
I am blessed. I am grateful and lucky and beyond amazed every day that I am here, living this life. A blog I was reading earlier today contained this statement: "Life can change, powerfully, in six years." She was referring to having been diagnosed with celiac disease six years earlier. Six years ago, for me, I was diagnosed with cancer. Life changed, powerfully, in the course of one week. Six years ago, I had no idea what the next months, weeks of my life would bring. I knew only that I had to do everything possible to stay alive, to go back to school the next year.
I don't think there is anything in this world that can prepare you for a life-shaking, paradigm-shattering event. Doesn't matter if it is celiac or cancer or lupus or the birth of a child or whatever. Other people say things like, "I couldn't do what you've done." But that isn't true. If you want it badly enough, you will do whatever it takes to adapt to this new challenge. Even though I used it once, I really don't like the term "new normal." Can anyone define for me "old normal?" Is it normal to sleep 4 or 5 hours a night, depend on caffeine and processed foods to sustain us during the day, use alcohol or substances as a means of relaxation? Don't tell me that is normal; don't even try. We are all so individualized. The glory of our lives is that we have the freedom to choose how we want to approach our days. We really can choose our attitudes. There is no science to confirm or deny that my (mostly) positive attitude helped me beat cancer, but I am cancer-free six years later despite still consuming mass quantities of sugar.
It's funny: most high school and college kids have a plan for their lives; they have at least a vague idea of where they'll be in five years' time. When I was a senior in college, five years ago, I had no remote vision of my future. I was still entrenched in the reality that I might not live to see the next semester. Everything has gone in a completely different direction than I would have thought. I always thought my younger brother would live in Colorado, not me. I would have said, "Oh wow, that's super cool! But so unlikely!" if someone had told me by 2013 I'd have completed two marathons, Chicago and Boston. I'd have climbed in Wyoming and Utah and Colorado, photographed the President and countless bands, friends, mountain bikers. Worked at Starbucks. Still worked at Starbucks... If someone had told me that in five years time, I would decide to go back to school for science. Like, for real. Science. Who does science??
And yet here I am, six years later, doing science. Doing science because I want to know what happened to my body and how I can fix it nutritionally. I, too, was diagnosed with celiac, but it popped up as a result of the immunodeficiency caused by chemo. Chronic inflammation, sinusitis: things that I can control with diet and exercise, things I so badly want to help others understand and control with diet and exercise. "I couldn't do what you've done..." What, couldn't eliminate gluten because it was a life or death situation? Of course you could! And discover quinoa and quinoa flour and garlic rosemary sockeye and white sweet potatoes! Life is worth figuring out how to make it work. It might even end up infinitely better than what you imagined.
In the meantime, so much for running and blogging about it. I haven't been running almost as much as I haven't been writing. I have been running a little bit, but not enough and with no motivation behind it. I think I need something to work towards. I'm not one of those people who can just Run. I need to train, even if it's half-hearted. I need a reason to haul out of bed when it's dark and cold when I would much prefer to sleep a little longer. So, if anyone wants to suggest a spring/early summer race, OR, if someone wants to train with me, please let me know!
There are so many beautiful things in this world, in my life. Again, so much to be grateful for. I am normal (hah) and lose sight of that perspective sometimes, but I also always come right back to it. It's been six years, and I am still kicking, and kicking it in Colorado, no less! I have my very own pair of gnarly skis! I have a plan and a vision for my future. It's an incredible one, too. I have No Idea how any of it will work out, but it is there, at least. It is something to work towards while still living every day and appreciating everything I have. We are all so lucky to be here. I only ask that you consider everything you're blessed with, realize that nothing is permanent and it is all we can do to appreciate what we have right now. Thank you for tuning in, hopefully I'll be back sooner. There has been a lot on my mind lately; maybe I'll share some more of it.
Trying to run more; thinking less about the small stuff. Love!
I am blessed. I am grateful and lucky and beyond amazed every day that I am here, living this life. A blog I was reading earlier today contained this statement: "Life can change, powerfully, in six years." She was referring to having been diagnosed with celiac disease six years earlier. Six years ago, for me, I was diagnosed with cancer. Life changed, powerfully, in the course of one week. Six years ago, I had no idea what the next months, weeks of my life would bring. I knew only that I had to do everything possible to stay alive, to go back to school the next year.
I don't think there is anything in this world that can prepare you for a life-shaking, paradigm-shattering event. Doesn't matter if it is celiac or cancer or lupus or the birth of a child or whatever. Other people say things like, "I couldn't do what you've done." But that isn't true. If you want it badly enough, you will do whatever it takes to adapt to this new challenge. Even though I used it once, I really don't like the term "new normal." Can anyone define for me "old normal?" Is it normal to sleep 4 or 5 hours a night, depend on caffeine and processed foods to sustain us during the day, use alcohol or substances as a means of relaxation? Don't tell me that is normal; don't even try. We are all so individualized. The glory of our lives is that we have the freedom to choose how we want to approach our days. We really can choose our attitudes. There is no science to confirm or deny that my (mostly) positive attitude helped me beat cancer, but I am cancer-free six years later despite still consuming mass quantities of sugar.
It's funny: most high school and college kids have a plan for their lives; they have at least a vague idea of where they'll be in five years' time. When I was a senior in college, five years ago, I had no remote vision of my future. I was still entrenched in the reality that I might not live to see the next semester. Everything has gone in a completely different direction than I would have thought. I always thought my younger brother would live in Colorado, not me. I would have said, "Oh wow, that's super cool! But so unlikely!" if someone had told me by 2013 I'd have completed two marathons, Chicago and Boston. I'd have climbed in Wyoming and Utah and Colorado, photographed the President and countless bands, friends, mountain bikers. Worked at Starbucks. Still worked at Starbucks... If someone had told me that in five years time, I would decide to go back to school for science. Like, for real. Science. Who does science??
And yet here I am, six years later, doing science. Doing science because I want to know what happened to my body and how I can fix it nutritionally. I, too, was diagnosed with celiac, but it popped up as a result of the immunodeficiency caused by chemo. Chronic inflammation, sinusitis: things that I can control with diet and exercise, things I so badly want to help others understand and control with diet and exercise. "I couldn't do what you've done..." What, couldn't eliminate gluten because it was a life or death situation? Of course you could! And discover quinoa and quinoa flour and garlic rosemary sockeye and white sweet potatoes! Life is worth figuring out how to make it work. It might even end up infinitely better than what you imagined.
In the meantime, so much for running and blogging about it. I haven't been running almost as much as I haven't been writing. I have been running a little bit, but not enough and with no motivation behind it. I think I need something to work towards. I'm not one of those people who can just Run. I need to train, even if it's half-hearted. I need a reason to haul out of bed when it's dark and cold when I would much prefer to sleep a little longer. So, if anyone wants to suggest a spring/early summer race, OR, if someone wants to train with me, please let me know!
There are so many beautiful things in this world, in my life. Again, so much to be grateful for. I am normal (hah) and lose sight of that perspective sometimes, but I also always come right back to it. It's been six years, and I am still kicking, and kicking it in Colorado, no less! I have my very own pair of gnarly skis! I have a plan and a vision for my future. It's an incredible one, too. I have No Idea how any of it will work out, but it is there, at least. It is something to work towards while still living every day and appreciating everything I have. We are all so lucky to be here. I only ask that you consider everything you're blessed with, realize that nothing is permanent and it is all we can do to appreciate what we have right now. Thank you for tuning in, hopefully I'll be back sooner. There has been a lot on my mind lately; maybe I'll share some more of it.
Trying to run more; thinking less about the small stuff. Love!
Wednesday, June 20, 2012
No good place to begin
Too frequently, I forget that I am not actually in this alone. I forget that others have shared these experiences, these emotions. People I know are, right now, fighting the same fight I am struggling with. They are winning gracefully and embracing the new lives they have been gifted. Less than three years ago, at a climbing camp hosted by First Descents in Jackson, Wyoming, I met a group of young adult cancer survivors. I was utterly overwhelmed by the experience and by the other survivors themselves. They all seemed so well-adjusted to this survivorship thing; they all seemed like they had their lives back on track and were living every day happily and purposefully. And a few of them were regular and fairly serious runners. I was none of those things at the time, and I didn't understand how one could possibly reach that point.
I learned over the course of the week that my initial conceptions were not exactly right... We were all struggling with adjusting to being young-adult cancer survivors; not one of us quite knew what that even meant. There was still so much pain and resentment, still so many questions that none of us could answer. One woman, in particular, impressed me as someone I would like to strive to emulate. Again, over the course of these past few years, I have learned she is just as fragile as I am; her own cancer struggle was ruthless. Yet I still look up to her and am inspired by her wisdom and ability to verbalize pretty much exactly how I am feeling. She blogged the other day, and while her story is completely different from mine, her words hit home, hard:
"Recovery seemed to go on forever, in a kind of horrific slow motion. Time stopped. During treatment, there are at least markers and milestones to let you know you are moving toward something. Once it ended, it often felt as if the limbo would never end. Life in the immediate aftermath of cancer is suspended animation."
For me, it has been five years since my diagnosis and treatment, and all of those years I have spent suspended. Cancer took something from me that I have only recently been able to define. I used to have this deep, burning energy, this drive I could never really explain but innately knew as part of me. Those who have known me since cancer would probably say I am driven and full of energy, but I am talking about something a little deeper. This energy was almost a cosmic pull from the future, something hooked and taking me as fast as possible into an incredible and limitless future. I was going to be a singer! a journalist! I was going to travel the world, taking photos of sick children in Africa, making a difference! I lived my whole childhood and teenage years believing that everywhere I was going was taking me somewhere new, that everything would lead to something else, unknown and wonderful. So many years ahead, so much potential.
And then, when I was 20, I got sick. All of those feelings and beliefs and unconscious understandings were stripped away and I was left bare of everything but a day-to-day struggle to live, to remember to wake up and inhale. I lost my drive. I lost my belief in a limitless and spectacular future. And then when the cancer was finally gone, I think that drive was replaced by fear. I graduated from college but had no idea how to plan a future because I didn't truly believe I still had one. I spent a lot of time asking God and the Universe in general, "Where am I supposed to go from here? What am I supposed to do with this experience; surely there is a reason for my still being here...?"
I know a few people now who would say that First Descents marked a shift in their view of themselves as survivors, changed their lives. FD certainly changed my life, but I think my epic turning point started just about a year ago. Just about a year ago, something sparked in me, very quietly. Whatever that spark was, it brought me to Colorado. I still had no direction, but I was going to live directionless on my own. One year ago, I began treatment for immunogammaglobulinemia (basically no secondary immune systems. Chemo was too effective). Gradually, my quality of life increased to levels I hadn't experienced since I was 18. I literally hadn't felt healthy in over five years. And then I kept kind of getting sick, and it turns out I have celiac disease. And it turns out my bones are osteoporitic. And I have high cholesterol. And I ran the Boston Marathon this past year.
This past year... I made friends; I learned that I can actually support myself. I changed my diet, and I feel Incredible. And recently, within the past six months, the most important things have happened: I developed this crazy relationship with someone I actually want to have a future with. Really? Is that what it comes down to, this whole "love" thing? My heart is growing in directions I honestly didn't think were possible for me. But it is so much more! All of these things, the immune issues, the celiac, finishing the Boston Marathon, hiking up a mountain at 14,000 ft in the air, and now this blowing open of my heart and soul for another person - this year, I realized pretty much two days ago, has reignited my drive. This deep and growling fire in my chest was a feeling I thought was gone. I thought the antidepressants were stamping it out or cancer had killed it for good. But unimaginably, there it is. Finally, painfully, almost reluctantly, I am looking to the future once more, allowing myself to be pulled into it once more. I am still terrified of the unknown, the lingering threat of sickness, whether mine or someone else's, the fear of losing everything I've built up (again).
It does seem, though, that the most important thing a person can possibly do is define and face their greatest fears. It isn't easy, and when you're living in suspended animation, sometimes it is actually impossible to pull yourself from that state. Sometimes it takes a sea change of events to wash away our restraints: a beautiful, incredible, seemingly impossible baby (for my friend) and a family bursting with more love than seems possible but it is because of everything they have overcome. For me, it took allowing myself to fully entrust myself to another person, to being diagnosed with celiac, to finishing the Boston Marathon though totally untrained and consuming no gluten and to pretty much fully recovering in about three days... That stoked this ambition to go back to school for nutrition (?!). So I am going back to school for food science and human nutrition! It is going to be at least four or five years before I'll be finished with everything, and then everything Really gets exciting. But look: a plan. A long-term, long-distance, future-based plan. A plan based around healing myself and hopefully, ultimately, helping others heal (and walk and run and eat lots of kale).
And fear, still, but fear tempered by love. I don't know what will happen at any point down this line, but I know what I dream about; I certainly know what I am hoping for. And so, like my friend, I have to end with this, because it is a universal something we all seek: Hope. There is hope for a future and whatever it holds and whatever it throws at us. I know this is supposed to be a blog about running, but humor me this post about running headlong, finally, again, into whatever is coming my way. Running through the snow and the rain and the 95 degree days and the perfect, breezy spring mornings and running next to someone who won't leave me behind and loving it all just for the sake of being alive and moving and breathing and Oh My God, it's gorgeous outside today! There is so much, and life is still hard too often, but it is all so worth it. It really is nice to have Me back. I feel so fully complete now, now with a purpose, with some ambition, with this love guiding me forward.
Thank you for reading, if you've made it this far. Promise, more running and nutrition-related posts to come, just had to get all this out. Love you, love me, love life. It's all good. Now go live a little! And happy summer...
I learned over the course of the week that my initial conceptions were not exactly right... We were all struggling with adjusting to being young-adult cancer survivors; not one of us quite knew what that even meant. There was still so much pain and resentment, still so many questions that none of us could answer. One woman, in particular, impressed me as someone I would like to strive to emulate. Again, over the course of these past few years, I have learned she is just as fragile as I am; her own cancer struggle was ruthless. Yet I still look up to her and am inspired by her wisdom and ability to verbalize pretty much exactly how I am feeling. She blogged the other day, and while her story is completely different from mine, her words hit home, hard:
"Recovery seemed to go on forever, in a kind of horrific slow motion. Time stopped. During treatment, there are at least markers and milestones to let you know you are moving toward something. Once it ended, it often felt as if the limbo would never end. Life in the immediate aftermath of cancer is suspended animation."
For me, it has been five years since my diagnosis and treatment, and all of those years I have spent suspended. Cancer took something from me that I have only recently been able to define. I used to have this deep, burning energy, this drive I could never really explain but innately knew as part of me. Those who have known me since cancer would probably say I am driven and full of energy, but I am talking about something a little deeper. This energy was almost a cosmic pull from the future, something hooked and taking me as fast as possible into an incredible and limitless future. I was going to be a singer! a journalist! I was going to travel the world, taking photos of sick children in Africa, making a difference! I lived my whole childhood and teenage years believing that everywhere I was going was taking me somewhere new, that everything would lead to something else, unknown and wonderful. So many years ahead, so much potential.
And then, when I was 20, I got sick. All of those feelings and beliefs and unconscious understandings were stripped away and I was left bare of everything but a day-to-day struggle to live, to remember to wake up and inhale. I lost my drive. I lost my belief in a limitless and spectacular future. And then when the cancer was finally gone, I think that drive was replaced by fear. I graduated from college but had no idea how to plan a future because I didn't truly believe I still had one. I spent a lot of time asking God and the Universe in general, "Where am I supposed to go from here? What am I supposed to do with this experience; surely there is a reason for my still being here...?"
I know a few people now who would say that First Descents marked a shift in their view of themselves as survivors, changed their lives. FD certainly changed my life, but I think my epic turning point started just about a year ago. Just about a year ago, something sparked in me, very quietly. Whatever that spark was, it brought me to Colorado. I still had no direction, but I was going to live directionless on my own. One year ago, I began treatment for immunogammaglobulinemia (basically no secondary immune systems. Chemo was too effective). Gradually, my quality of life increased to levels I hadn't experienced since I was 18. I literally hadn't felt healthy in over five years. And then I kept kind of getting sick, and it turns out I have celiac disease. And it turns out my bones are osteoporitic. And I have high cholesterol. And I ran the Boston Marathon this past year.
This past year... I made friends; I learned that I can actually support myself. I changed my diet, and I feel Incredible. And recently, within the past six months, the most important things have happened: I developed this crazy relationship with someone I actually want to have a future with. Really? Is that what it comes down to, this whole "love" thing? My heart is growing in directions I honestly didn't think were possible for me. But it is so much more! All of these things, the immune issues, the celiac, finishing the Boston Marathon, hiking up a mountain at 14,000 ft in the air, and now this blowing open of my heart and soul for another person - this year, I realized pretty much two days ago, has reignited my drive. This deep and growling fire in my chest was a feeling I thought was gone. I thought the antidepressants were stamping it out or cancer had killed it for good. But unimaginably, there it is. Finally, painfully, almost reluctantly, I am looking to the future once more, allowing myself to be pulled into it once more. I am still terrified of the unknown, the lingering threat of sickness, whether mine or someone else's, the fear of losing everything I've built up (again).
It does seem, though, that the most important thing a person can possibly do is define and face their greatest fears. It isn't easy, and when you're living in suspended animation, sometimes it is actually impossible to pull yourself from that state. Sometimes it takes a sea change of events to wash away our restraints: a beautiful, incredible, seemingly impossible baby (for my friend) and a family bursting with more love than seems possible but it is because of everything they have overcome. For me, it took allowing myself to fully entrust myself to another person, to being diagnosed with celiac, to finishing the Boston Marathon though totally untrained and consuming no gluten and to pretty much fully recovering in about three days... That stoked this ambition to go back to school for nutrition (?!). So I am going back to school for food science and human nutrition! It is going to be at least four or five years before I'll be finished with everything, and then everything Really gets exciting. But look: a plan. A long-term, long-distance, future-based plan. A plan based around healing myself and hopefully, ultimately, helping others heal (and walk and run and eat lots of kale).
And fear, still, but fear tempered by love. I don't know what will happen at any point down this line, but I know what I dream about; I certainly know what I am hoping for. And so, like my friend, I have to end with this, because it is a universal something we all seek: Hope. There is hope for a future and whatever it holds and whatever it throws at us. I know this is supposed to be a blog about running, but humor me this post about running headlong, finally, again, into whatever is coming my way. Running through the snow and the rain and the 95 degree days and the perfect, breezy spring mornings and running next to someone who won't leave me behind and loving it all just for the sake of being alive and moving and breathing and Oh My God, it's gorgeous outside today! There is so much, and life is still hard too often, but it is all so worth it. It really is nice to have Me back. I feel so fully complete now, now with a purpose, with some ambition, with this love guiding me forward.
Thank you for reading, if you've made it this far. Promise, more running and nutrition-related posts to come, just had to get all this out. Love you, love me, love life. It's all good. Now go live a little! And happy summer...
Tuesday, May 22, 2012
A strange victory
As of this morning, I am officially "in remission" from the lymphoproliferation that had been growing in my face. A non-cancerous tumor in the lymph tissue in my sinuses, this little bugger wasn't exactly harmful, but it was growing and who knows where it might have grown to if left to its own devices. They discovered the mass in late August, and I began a 6-month course of treatment for it in October. Had my last drug sesh just after the marathon in April, and today I had my PET scan to determine whether the treatment worked. Supposedly, the treatment worked! Targeted B-cell therapy - not technically chemo, but a drug with the same idea: seek out any rapidly reproducing and growing B-cells, attack and kill them! Hilariously, though, this is the second time I have gone through this. So, please forgive me if I'm not jumping all around in ecstasy because, I'm in remission!
Yes, I am happy, beyond happy that the facetumor is gone. But I suppose it could come back. It has happened before. Also, this past December was my five-year anniversary of cancer diagnosis. This past December was when this was all supposed to be finished, five years worth of treatment and follow-up care. Today, though, marks the beginning of another five years worth of follow-up. Scans every three months for a year, then every four months, then every six months for the remaining three years. Get all that? It is a strange feeling, knowing that you have a doctor's appointment in three months to make sure there are no foreign masses growing somewhere in your body. Cancer wipes out any sense of security we have about our bodies. It gives root to a very deep, mostly ignored fear of betrayal by the one thing that is supposed to be impermeable: ourselves. A tumor physically removed is tangible proof that we actually have no control over what happens to us. Yes, we can quit smoking; eat more fruits and vegetables; remain active; wear sunscreen. We can take actions to Lessen our chances of cancer or sickness, but no, we can't stop it. I had leukemia, a blood cancer caused by a defective gene. Doctors don't know what causes it or why it manifests in some people at certain times and not others. Why did I get ALL when I was 20 and not three? Why did my facetumor return without the presence of any viral instigator (as was the case the first time)? Why does a 28-year old woman with absolutely no genetic predisposition and a healthy lifestyle develop a lump in her left breast? There are no answers to these questions, at least not today, but we are still allowed to ask them occasionally. I think the key is to not dwell on them, though.
I just had an interesting visual: my body is constantly at war. I always considered this cancer thing a war, that I was fighting for my life with a little help from my chemotherapeutic friends. Now, I have an autoimmune disorder where my insides are beating up my other insides. I get to help this fight by eliminating the main catalyst, gluten. But then I also ask crazy things of myself: wake up every day. Bike to work every day. Run 3, 6, 26.2 miles, Right Now! In a sense, I don't want this battle to ever end. I don't want to ever stop pushing my limits, testing the waters of recklessness and endurance. Now with the gluten thing, I get to get creative with my diet and nutrition and fueling all these crazy adventures. It is all very interesting to me (cue up another post on that...), and I like being in control of the madness that is my body. I don't like tumors and uncertainty and having to rely on drugs to stay healthy.
There are also days (sparingly), when I feel like I cannot plan my life too far in advance. I have a doctor's appointment in three weeks for my immunoglobulins. I'll have another one in another three weeks. I'll have a PET scan in three months. I'll have another colonoscopy in three months. Life lived incrementally, plans made around requisite hospital visits. Forgive me if this post sounds ungrateful or whiney. I've written loads before about the fact that I love my life, my world, am so thankful for the experiences that have led me here. But I am ready for this medical nonsense to be finished. And it won't be for at least another five years. So, today, I get to grumble a little bit. We always get to grumble a little bit. Like I said above though, none of it is worth dwelling on. We live the lives we have and make the best of it. I am planning a vacation to my happiest place on earth in two months, thinking about grad school (there's that other post teaser again!), baking delicious gluten-free foods. Life goes on.
And I'm planning on going for a run tomorrow morning, after the pint of ice cream I ate earlier settles down a bit. So, awesome. And I'm going hiking/camping/off-roading with good people this weekend! And, haha, I'm in remission. Again. So, yay, life. Thanks for stopping by... Keep on running.
Yes, I am happy, beyond happy that the facetumor is gone. But I suppose it could come back. It has happened before. Also, this past December was my five-year anniversary of cancer diagnosis. This past December was when this was all supposed to be finished, five years worth of treatment and follow-up care. Today, though, marks the beginning of another five years worth of follow-up. Scans every three months for a year, then every four months, then every six months for the remaining three years. Get all that? It is a strange feeling, knowing that you have a doctor's appointment in three months to make sure there are no foreign masses growing somewhere in your body. Cancer wipes out any sense of security we have about our bodies. It gives root to a very deep, mostly ignored fear of betrayal by the one thing that is supposed to be impermeable: ourselves. A tumor physically removed is tangible proof that we actually have no control over what happens to us. Yes, we can quit smoking; eat more fruits and vegetables; remain active; wear sunscreen. We can take actions to Lessen our chances of cancer or sickness, but no, we can't stop it. I had leukemia, a blood cancer caused by a defective gene. Doctors don't know what causes it or why it manifests in some people at certain times and not others. Why did I get ALL when I was 20 and not three? Why did my facetumor return without the presence of any viral instigator (as was the case the first time)? Why does a 28-year old woman with absolutely no genetic predisposition and a healthy lifestyle develop a lump in her left breast? There are no answers to these questions, at least not today, but we are still allowed to ask them occasionally. I think the key is to not dwell on them, though.
I just had an interesting visual: my body is constantly at war. I always considered this cancer thing a war, that I was fighting for my life with a little help from my chemotherapeutic friends. Now, I have an autoimmune disorder where my insides are beating up my other insides. I get to help this fight by eliminating the main catalyst, gluten. But then I also ask crazy things of myself: wake up every day. Bike to work every day. Run 3, 6, 26.2 miles, Right Now! In a sense, I don't want this battle to ever end. I don't want to ever stop pushing my limits, testing the waters of recklessness and endurance. Now with the gluten thing, I get to get creative with my diet and nutrition and fueling all these crazy adventures. It is all very interesting to me (cue up another post on that...), and I like being in control of the madness that is my body. I don't like tumors and uncertainty and having to rely on drugs to stay healthy.
There are also days (sparingly), when I feel like I cannot plan my life too far in advance. I have a doctor's appointment in three weeks for my immunoglobulins. I'll have another one in another three weeks. I'll have a PET scan in three months. I'll have another colonoscopy in three months. Life lived incrementally, plans made around requisite hospital visits. Forgive me if this post sounds ungrateful or whiney. I've written loads before about the fact that I love my life, my world, am so thankful for the experiences that have led me here. But I am ready for this medical nonsense to be finished. And it won't be for at least another five years. So, today, I get to grumble a little bit. We always get to grumble a little bit. Like I said above though, none of it is worth dwelling on. We live the lives we have and make the best of it. I am planning a vacation to my happiest place on earth in two months, thinking about grad school (there's that other post teaser again!), baking delicious gluten-free foods. Life goes on.
And I'm planning on going for a run tomorrow morning, after the pint of ice cream I ate earlier settles down a bit. So, awesome. And I'm going hiking/camping/off-roading with good people this weekend! And, haha, I'm in remission. Again. So, yay, life. Thanks for stopping by... Keep on running.
Thursday, May 17, 2012
So many wonderful things
Raspberry sorbetto after a sunset photo-walk after a wild rice/pork tenderloin/coconut-curry sweet potato goulash repast after a nap. Atmospheric distortion: dark violets to light greys with each successive mountain range as the sun sets behind them all. Realizing that confidence is beautiful. Realizing, too, that the person I used to be before the Boston Marathon, before celiac, before Colorado and certainly before cancer, is not the woman I have become and not particularly someone I want to emulate. Realizing the neighborhood in which I live is extremely lively and interesting when you're strolling around it on foot in the evening. (There's a Buddhist temple/house/bookstore three blocks away?!) Finishing that pint of delicious raspberry sorbetto and you know what? I don't even feel bad about it because it is gluten and dairy free and I ran yesterday... Oh yeah, and running.
Yesterday after work, I flopped onto my bed with every intention of closing my eyes and napping for a bit before I began the adventure of cooking my dinner. My brain, though, didn't shut down. Instead, it reminded me that I hadn't really run in about 2 weeks, hadn't moderately exercised in a few days. Also, I just wasn't that tired. So I popped up, put on my shorts and wicking t-shirt, laced up my sneaks, and headed into the wind. 3.6 miles later and that was it. Run and done. For a while last night, I couldn't stop thinking about how soon I became winded (after, like, 5 minutes) and how the run really didn't feel that easy. Then I realized that I have this ridiculous double standard for myself. I had just run for 35 minutes straight, two days after nearly passing out from exhaustion at work. So many people don't run, period. My roommate reminded me that of course it wasn't particularly easy; I've only run twice since the marathon a month ago. You don't just stay in shape because you want to be in shape; you have to make an effort.
Every day I have to remind myself to make an effort. Whether concerning running, what I'm eating, how I approach my job and coworkers, or how I approach the day in general. Maintaining a positive attitude can be difficult, especially when it seems like everyone else is in a bad mood or no one will ever want to hire me for a "real" job. I have to remind myself that there are So Many Wonderful Things! and that I am incredible and indestructible in a way that has nothing to do with twenty-something obliviousness. It isn't that I can do stupid things and suffer no consequences; it is that I have survived so much that I know I can conquer any fear or challenge. I know too many wonderful people who doubt themselves or who don't give themselves nearly enough credit as human beings. Of course, there is a line between confident and cocky, but why are too many people afraid to believe in their own strength and beauty? It has taken me years and a whole lot of self-doubt (that I still struggle with) to reach this point, but seriously, we are all so amazing, so capable of grabbing life by the horns and making it our own.
I really can't emphasize enough that there are so many wonderful things in our worlds, so many small or huge or seemingly insignificant things that can only bring you joy if you make an effort to see them. Walking underneath a giant flowering tree that smells Amazing! Knowing that somewhere out there, maybe close by, possibly not close enough, there is another person who loves you and believes in you even when you doubt yourself. Think about it: you have that person somewhere. At the very least, you have yourself, and often you can be your own greatest source of support in tough times.
If you don't run, you won't improve your endurance and lung capacity. If you don't take a moment to breathe and love yourself, you might come to the end of your day questioning what exactly you accomplished, and was it worth it? I didn't accomplish anything measurable or necessarily lasting today, but I told someone I love them, and I sat for a stunning sunset, and I reminded myself, Again, that my life can be so stupid hard sometimes, but it is all worth it. Even the pint of sorbetto. That was definitely worth it. So. How was Your day?
Yesterday after work, I flopped onto my bed with every intention of closing my eyes and napping for a bit before I began the adventure of cooking my dinner. My brain, though, didn't shut down. Instead, it reminded me that I hadn't really run in about 2 weeks, hadn't moderately exercised in a few days. Also, I just wasn't that tired. So I popped up, put on my shorts and wicking t-shirt, laced up my sneaks, and headed into the wind. 3.6 miles later and that was it. Run and done. For a while last night, I couldn't stop thinking about how soon I became winded (after, like, 5 minutes) and how the run really didn't feel that easy. Then I realized that I have this ridiculous double standard for myself. I had just run for 35 minutes straight, two days after nearly passing out from exhaustion at work. So many people don't run, period. My roommate reminded me that of course it wasn't particularly easy; I've only run twice since the marathon a month ago. You don't just stay in shape because you want to be in shape; you have to make an effort.
Every day I have to remind myself to make an effort. Whether concerning running, what I'm eating, how I approach my job and coworkers, or how I approach the day in general. Maintaining a positive attitude can be difficult, especially when it seems like everyone else is in a bad mood or no one will ever want to hire me for a "real" job. I have to remind myself that there are So Many Wonderful Things! and that I am incredible and indestructible in a way that has nothing to do with twenty-something obliviousness. It isn't that I can do stupid things and suffer no consequences; it is that I have survived so much that I know I can conquer any fear or challenge. I know too many wonderful people who doubt themselves or who don't give themselves nearly enough credit as human beings. Of course, there is a line between confident and cocky, but why are too many people afraid to believe in their own strength and beauty? It has taken me years and a whole lot of self-doubt (that I still struggle with) to reach this point, but seriously, we are all so amazing, so capable of grabbing life by the horns and making it our own.
I really can't emphasize enough that there are so many wonderful things in our worlds, so many small or huge or seemingly insignificant things that can only bring you joy if you make an effort to see them. Walking underneath a giant flowering tree that smells Amazing! Knowing that somewhere out there, maybe close by, possibly not close enough, there is another person who loves you and believes in you even when you doubt yourself. Think about it: you have that person somewhere. At the very least, you have yourself, and often you can be your own greatest source of support in tough times.
If you don't run, you won't improve your endurance and lung capacity. If you don't take a moment to breathe and love yourself, you might come to the end of your day questioning what exactly you accomplished, and was it worth it? I didn't accomplish anything measurable or necessarily lasting today, but I told someone I love them, and I sat for a stunning sunset, and I reminded myself, Again, that my life can be so stupid hard sometimes, but it is all worth it. Even the pint of sorbetto. That was definitely worth it. So. How was Your day?
Wednesday, May 9, 2012
Huffing and puffing.
There's nothing like a little mountain-hiking in Colorado to school you in fitness. Yesterday, on my day off, I thought it would be a wonderful idea to go and hike Mt. Sanitas in Boulder. It was a wonderful idea, but at over 1300 ft. of elevation gain in 1.2 miles, it is a pretty stiff hike. I also thought it would be a great idea to run as much of the downhill as I could. I tried, but there was No Chance of my running up the thing. Boulderites being crazy, there were actually a handful of people running the whole 3-mile loop, though there were more of us breathing heavily and stopping to "take in the view." It is a beautiful view. Today, though, I am sore. Running downhill and hiking up a whole lot of stairs took its toll on my legs.
Actually, my whole body feels out of whack. My question becomes, did I fuel properly for this hike, short as it was? Or was I possibly dehydrated and undernourished? I just don't feel well today. Additionally, I think somewhere in my consumptions over the past day or two, I ate gluten. I haven't felt this crummy (haha...) in maybe two months, or since this whole game started. Really, I don't know what else it could be. The symptoms are the same: gas, nausea, heartburn. Lame. A whole lot of lame. The issue is cross-contamination. Obviously, I did not consciously consume gluten. No whole wheat bread or delicious, delicious beer. I did, though, eat out at a restaurant that cannot guarantee their food didn't come into contact with a gluten source. Where does one draw the line between caution and calculated risk? If I go to a Mexican restaurant and eat the corn tortilla chips, I tend to trust they are 100% corn. But maybe I'm too trusting; but more likely I'm just still getting used to all of this.
So. Let's summarize: a hearty hike and a speedy run. Something funky going on in my gut yesterday and today. Too much coffee yesterday and not enough water and ultimately not enough quality sleep. The result? Total-body and brain fatigue. Of course, this is all pure speculation based entirely on how I feel, but I imagine that my body was unable to process and absorb the nutrients and vitamins necessary to heal and rebound after a (moderately) intense athletic session. This is all silly and frustrating, but it is also interesting to me how my body responds to certain stimuli and restrictions. Our bodies are so finely tuned, and I have been working hard recently to make sure mine stays healthy, that it becomes much more obvious when something is wrong. I guess the key, then, is to acknowledge that "off" feeling, try and root out the source, and fix whatever the problem may be. I ate a lot of vegetables and very little coffee today. Still, probably didn't drink enough water... Baby steps.
So anyway, the adventures of celiac-runner continue. Hopefully my gut will be a bit better tomorrow... I just signed up for a month of yoga, and I can't have intestinal issues while I'm stretching and strengthening and clearing my mind of all negativity! Thanks for checking in; happy hump day; happy spring. Thinking less; eating more; running sometimes.
Actually, my whole body feels out of whack. My question becomes, did I fuel properly for this hike, short as it was? Or was I possibly dehydrated and undernourished? I just don't feel well today. Additionally, I think somewhere in my consumptions over the past day or two, I ate gluten. I haven't felt this crummy (haha...) in maybe two months, or since this whole game started. Really, I don't know what else it could be. The symptoms are the same: gas, nausea, heartburn. Lame. A whole lot of lame. The issue is cross-contamination. Obviously, I did not consciously consume gluten. No whole wheat bread or delicious, delicious beer. I did, though, eat out at a restaurant that cannot guarantee their food didn't come into contact with a gluten source. Where does one draw the line between caution and calculated risk? If I go to a Mexican restaurant and eat the corn tortilla chips, I tend to trust they are 100% corn. But maybe I'm too trusting; but more likely I'm just still getting used to all of this.
So. Let's summarize: a hearty hike and a speedy run. Something funky going on in my gut yesterday and today. Too much coffee yesterday and not enough water and ultimately not enough quality sleep. The result? Total-body and brain fatigue. Of course, this is all pure speculation based entirely on how I feel, but I imagine that my body was unable to process and absorb the nutrients and vitamins necessary to heal and rebound after a (moderately) intense athletic session. This is all silly and frustrating, but it is also interesting to me how my body responds to certain stimuli and restrictions. Our bodies are so finely tuned, and I have been working hard recently to make sure mine stays healthy, that it becomes much more obvious when something is wrong. I guess the key, then, is to acknowledge that "off" feeling, try and root out the source, and fix whatever the problem may be. I ate a lot of vegetables and very little coffee today. Still, probably didn't drink enough water... Baby steps.
So anyway, the adventures of celiac-runner continue. Hopefully my gut will be a bit better tomorrow... I just signed up for a month of yoga, and I can't have intestinal issues while I'm stretching and strengthening and clearing my mind of all negativity! Thanks for checking in; happy hump day; happy spring. Thinking less; eating more; running sometimes.
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