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.

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?

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.

Sunday, May 6, 2012

Miss me....??

A most ridiculous thing happened today: my shorts nearly slid off in the supermarket.  It sounds absurd, I know, but as I was walking out with my shopping bags and orange juice, these size-2 Gap shorts kept inching their way down my bum, and any amount of wiggling I tried could not halt their descent.  I stopped and tucked my sweater into my shorts (oh, Colorado weather...) and was good to go for the 6-block walk home.

I share this anecdote not to highlight the reality that I need either new shorts or a new belt or both, nor am I trying to illustrate how I don't have much padding around my hips/butt.  No, I'm sharing this because my new reality is that I don't weigh much, and it is actually quite frustrating.  My weight has become a very visible representation of a larger, darker issue: I am not gaining weight, and I am not absorbing nutrients properly.  The adventures of a newly-diagnosed Celiac athlete!  Trying to eat healthily but also adequately fuel my body.  It's harder than it looks, folks.

It is now nearly three weeks since I ran and Finished (!) the Boston Marathon.  The race was beyond incredible.  So many thousands of runners, all of whom had worked so hard to get to Hopkinton.  Standing around in the athlete's village prior to the start of the race, sipping Gatorade and coffee and water, I could not believe I was there.  With everything that happened these past few months and years, I never imagined I would be wearing a bib number for the Boston Marathon.  Five years after I was sitting in a hospital bed in Chicago wishing I was in Boston drinking with my college friends, I was about to take off running in the race as an official entrant.  I wrote a little bit about this on here, but I had not properly trained for this marathon.  Between being sick and dealing with my GI issues and then having to overhaul my entire diet and way of thinking about food, I just had not put in the miles necessary.  The longest long run I did was about 10 miles, and that was in February.  Which isn't to say I wasn't fit: I bike every day; I still do live at altitude; I was running a little bit.  I had also spent the month before the marathon focusing on nutrition and putting on weight so that no matter what, at least I'd have a little bit of fat or Something to give me energy over the course of the race.

My attitude was basically, "Hell, I have an entry to this crazy marathon.  This may never happen again.  No, I haven't trained well; no, I have no idea what is going to happen; yes, there is a good possibility I won't be able to finish for whatever reason.  So what.  I'm going.  I'm starting.  I will enjoy the experience, whatever that means."  And so I did

A few weeks earlier, I had seen Scott Jurek speak at the REI here in Denver.  He was really interesting, and I wish I could have picked his brain more, but one part of his presentation stuck with me.  He talked about how he managed to win the Western States 100, 7 years in a row, and how such a thing is even possible.  Essentially, his takeaway point was 1: you have to want it, and 2: you have to Really want it.  I wanted this race.  I wanted to be there, and I wanted like crazy to finish.  I hadn't beaten cancer and the face tumor and no B-cells and the face tumor redux and celiac disease only to drop out halfway.  So I took off running when it was finally my turn to cross the start line, and I kept that sentiment with me the entire time.  And even though I ran/walked the thing after about 10 miles in, never once did it occur to me to stop.  Notably, never once did my GI give me any trouble, either.  I crossed the finish line in Copley Square and promptly started sobbing because of every single thing I had overcome to get there.  Because I had just finished the Boston Marathon; because I had once again proven to myself that I am stronger than I give myself credit for.

We all are stronger than we allow.  Our bodies are incredible, and I know so many people who just laugh when the odds keep stacking against them.  Really, if I can run a marathon without adequate training and actually Beat the time of my first marathon (that I did train for...), if I can feel completely back to normal two days after the race, biking to work and getting on with life, if I can get through every single day with a lowered immune system and an allergy to gluten, what can't I do?

Sometimes I don't understand why I am still here, what I am supposed to be doing with this ridiculous life I've been given.  Life can be so hard, and it seems like it would be easy to give up too often.  I don't know what to eat; I have to take supplements and medicines because no matter how much kale I eat, my folic acid levels are just too low.  Etc., etc., etc.  None of this is important.  What matters is that I am still here; I can still run and bike and do one whole pull-up.  There are all these wonderful things and even though I am struggling with celiac and my weight and energy levels, life is So Good!  I guess I'll just keep working on it, eating steak and Greek yogurt and maybe just suck it up and go buy new shorts.  Thanks for checking in; that's what's been on my mind lately.  Hopefully I'll write more frequently about how this whole celiac/nutrition/running/biking/hiking mountains thing goes.  I've given myself a three-week break from running, but I miss it so it's time to start running more, eating more, thinking less about the negative, focusing on the awesome.  So much awesome...