Thursday, December 24, 2009

Getting in the Christmas stomach

Wait...  That doesn't sound quite right.  Christmas Spirit?!  No, no, definitely the Christmas stomach.  So many cookies, breads, cheeses, chocolate covered everythings...  I am feeling a wee bit guilty about all of it, especially since I haven't had time to run the past two days, and I won't be running tomorrow either...  So, definitely feeling the Christmas stomach.

Haha, but it is all good.  I love cookies and chocolate and bread and cheese, so much good cheese.  I also love shopping for my family, walking around the malls and boutiques, considering what my little brother might like or find amusing this year, what my mother deserves after another year of putting up with all of our shenanigans, what my dad could use to spruce up our camp in Canada....  And then watching as they open their gifts, their (hopefully, fingers crossed) joy as they slip a finger underneath the tape to reveal that sweet t-shirt or watch or pocket-size multi-tool.  Sitting around our living room with a fire going, hot chocolate and coffee, maybe a mimosa or two, everyone together once again; that is Christmas.

Three years ago I was plopped in a hospital bed for Christmas, and that was the only time in my 23 years that I did not spend the day goofing around with my family.  They came to the hospital and tried to bring Christmas with them, but it is obviously not the same as actually sitting in that living room in front of the fire and the tree and All of the food.  Actually, if I remember correctly, Christmas marked the very beginning of all of my chemo treatments, and I was really not feeling too well that day.  Kind of poopy, if you know what I mean...  

But now, here I am, once again, on Christmas Eve, sitting at home and laughing at the stupidity and normalcy of my family.  I actually had to work earlier today, and as I was sweeping the floor of Starbucks, I had a pretty obvious epiphany.  My thought, as another Christmas carol was playing over the speakers, was: "I am so glad I am alive right now."  It wasn't brought on by any special moment or event, just the usual mundane life thing.  It was a brief thought, but I'm glad it decided to stop into my head.

It is Christmas, and my family is all sorts of awkward and rude and tense, and I love them for it, and I can't imagine not spending these days with them.  I wish everyone a Very Merry Christmas or whatever holiday you celebrate.  Hopefully you are with people who love you and whom you love as well.  And if not, well, there is always cheese...  Whatever you need to do, do it so that you can love your life, even just a little bit.

I love you all, and thank you for a wonderful year, and to all a good night!  :)

Monday, December 14, 2009

Music makes my world a much better place

I have a number of important cancer-related updates for those of us who may be curious what, if any, lingering physical effects remain from the nearly two years of chemo I received.  Well.  Let me tell you, I am still finding little interesting tidbit remainders.  For instance:  just under 3 years ago, I started this one drug, vincristine.  Same 'ol cancer-cell killing chemo drug, one of many.  One of the notable side-effects of this drug, however, is "peripheral neuropathy."  "Numbness or tingling in the hands and feet" anyone?  Basically, the drug damages the nerves in the tips of your fingers and toes.  I experienced mild numbness in my fingers, often contributing to comedic ventures involving toast...  But I digress.  The feeling eventually returned to my fingers and toes, and all is well.  I recently learned, however, that the damage is longer-lasting than I had thought.  As the temperature continues to drop outside, my hands continue to get cold.  One day recently, my hands got Really cold outside.  And I found that when the rest of my hands started to warm up, my finger tips continued to tingle.  It took a really long time, a lot of frantic hand-shaking, and more than a few minutes under hot water for them to finally get back to feeling.  So.  In summation: whatever happened to the tips of my fingers seriously affected my cold hand peripheral circulation nearly three years later.  Hoorah!  Weird feeling to not be able to feel.

Update number dos:  As some of you may know from having seen me, when my hair decided it was time to grow back two years ago, it did, in fact, grow back curly.  For two years now, I have had a serious love/hate relationship with my hair.  When it was super short and curly, it was cute and fun.  Then it started growing out some and (I thought) it looked unshapely and awkward.  I was hesitant to get it cut though because I am vain and truly enjoy having my hair around.  'S anyway, it kept on growing.  Finally, this spring and into summer, it had grown out enough that I liked it.  I also didn't like it.  I didn't like what the curls stood for, but I had resigned myself to them.  A hairdresser had confirmed for me one year ago that I was officially a curly-haired lady.  Funny thing though; she was Wrong.  I manned up and got myself a much-needed haircut last Tuesday.  And the curls?  Are gone.  Cut off.  Caroline - 1.  Chemo Curls - 0.  My hair is still kind of wavy, but the ringlets of yore are now nothing but memories fraught with emotion.  So if you are female and in chemo or recently out of chemo and your hair grew back curly, perhaps it is only a temporary permanent...

And those are my sort of lame cancer-updates.  In separate but sort of related news, I love life so hard right now.  Maybe it is the haircut.  Maybe it is that my jeans are getting consistently baggier.  Maybe it is that I have been volunteering more and Finally going out and taking pictures.  Perhaps it is because I made a decision to be more proactive with my photography and am working on figuring out how to find myself a job.  Or maybe it is that a random guy told me I was "really cute" the other night, which, even if he was some guy I will never see again and is ultimately unimportant in the long-term, it is still nice to hear those sorts of things.

Nothing has really changed except that every day I get a little more comfortable with my current situation and what I can do to make it better for myself.  Am I allowed to be happy at stupid things?  It is so easy for me to get dragged down by life sometimes.  Obviously; I have been complaining all about it on here.  But Photos, Music, random guys, chocolate?  Rodrigo y Gabriela playing at Barnes and Noble while I'm eating a cookie and drinking tea?  Seriously, that is my idea of just about perfect, and I am living it right now.  Insurance be damned, I will smile in spite of your attempts to bring me down.

Finally, briefly:  a new, serious attempt to put my photography "out there."  It is new, in progress, and still being edited, but I am always open to suggestions and comments.  Check it out!!  HERE.  Anyway, so, Happy Tuesday, sad toad.

Monday, December 7, 2009

Hormonal Rantz!

ummm....  I am sorry for my p.m.s.-induced sob-story of a prior b-log post.  I swear and promise I am not usually that blatantly depressing.  Somewhat embarrassingly, I am pretty sure that whole thing was a result of some severe p.m.s.  I'm not sure if it is the drugs I am still on or if my body is finally figuring itself out after 3 years of birth-control, steroids, weight loss and gain, or what, but recently I have been getting this new and bothersome moodiness the week before my period.  Woot!  Personal information!  But anyway, please do not take me too seriously.

Because here is the thing.  If you were given the choice, would you take the past three years and change them?  If you could, would you erase all the events and whatever may have happened these last 36 months?  I would not.  I would not change anything that has happened.  Perhaps, in retrospect, I am a bit disappointed with how I may have reacted to some things, but every single event stemming from exactly three years ago tomorrow has shaped me into the person I am so proud to be today.

I was at the Imerman Angels holiday party this past Thursday, and one of the speakers said that cancer is "highs and lows."  It isn't always the deep darkness; there are moments of happiness and joy and hope interspersed throughout the whole thing.  The lows help us to appreciate the highs that much more, and having gotten through the dark times, I am so, So thankful to be here.  I was sitting in Caribou Coffee earlier (don't judge me.), and I realized that in spite of everything, I am freaking glad to be alive right now.  Haha, I love me so much, and I love life and my family and my friends and laughing and writing and music and running and just being able to sit at a corner table in a coffee shop watching clouds shift and fly on an almost winter day.  How can you not love those things, really?

Having cancer forced me to take a good, solid and long look at myself and figure out who I was and who I wanted to be.  Some of the realities that I confronted scared me, and some things I was okay with.  Either way, I did a good amount of serious self-examining, which I probably wouldn't have done for years.  Now I get to live my life without having to figure out who I am, which is different from trying to figure out what I want to do - also a difficult question, but not nearly as important.  Whatever I end up doing with myself, I will do it with confidence and (hopefully) a smile.

Finally, I met an author a few weeks ago at a book reading.  He had written a memoir, and I screwed up my courage and went to his reading in some random person's living room in Naperville.  The reading itself was relatively uneventful.  But I asked Stephen about being honest in a memoir.  Basically, he told me that life never ends up neatly and tidily.  In reality, the hero doesn't conquer all the demons and ride off into the sunset with no worries, and a memoirist who ends with that theme is lying to the reader.  So, as this is something of a memoir, I would like to be honest in that it has been three basically crappy years.  My "college years" were wrecked, and now I'm stuck trying to figure it all out, and it is not easy.  But, like I said, I wouldn't change it.  Life is going to continue to be messy and sticky and probably often unpleasant, but it is All Mine.

So tomorrow, as the saying goes, a very merry UnBirthday to me.  It kind of is a birthday, of sorts.  Definitely an unbirthday.  Haha, feel free to celebrate your unbirthday tomorrow, as well.  Why not?  You're still here, kicking and screaming and pushing through to the good times, and that is worth some tea and cake, at the very least.  Aight, I'm out.  Peas.

Tuesday, December 1, 2009

Okay, whose god did I anger this time?

And how do I get back in his or her graces??  Shiva - the Hindu god often referred to as "the destroyer?"  Athena - Greek goddess of warfare and wisdom?  Or even my God, whom I haven't really talked to in a while?  Somehow, somewhere in there I must have done something to throw my karma all off track, and I am at a complete loss as to how to fix it or even if I can.

I should be going to sleep right now.  I am supposed to get up and run some miles tomorrow morning, but I haven't been able to fall asleep at reasonable hours lately.  12.30 a.m. (for me) is not a reasonable hour.  I think there has been so much on my mind lately that I can't quiet it down, but I also cannot distinguish between thoughts.  Tonight, for instance, I have spent the past few hours looking at a number of different cancer blogs, and almost all of them have made me realize I have been rattling on in the b-log, whining about the small stuff and the emotional not-really-drama in my life.  People - young people, old people, generally beautiful people - are sick; they are dying, and some have already died.  And I read those blogs and struggle not to cry because it is not fair that I should be sitting here bitching about a stupid cold while they are savoring life even though they may be struggling to breathe.

How is it so easy to forget what we've learned?  After the hard stuff is over, when the life-loving glow of surviving a trauma fades away, which it inevitably will for most of us, we often forget what it means to truly appreciate each and every day for what it is.  Why has it been so easy for me to forget?  A year ago when I had the face tumor, I was happier than I had been in a very long time.  Yes, I was in serious pain for a while and couldn't really eat, but my friends surrounded me and supported me, and I was completely and absolutely in love with life.  I was recently perusing some of the b-log archives and my old journal, and I realized why I felt so free.  I had, yet again, escaped a death-sentence.  Before they finally diagnosed and started treating my tumor, I thought I was going to die again.  Not die, again, but face the fear for the second time.  And then they told me it was non-cancerous and four weeks of Rituxan and Bam! face-tumor free.  The physical effects of the tumor were negligible on my overall mood because I was just so freaking relieved to know what it was and to have a plan of action.

Only one year later, however, and one week away from my three-year anniversary of my diagnosis, and everything seems to be just a bit off with me.  Losing important things; breaking things; sniffling.  I really don't want to get sick again, and I don't think that I will, but I might.  I am only one year out of treatment.  It is anyone's game at this point.  Looking into my chest full of emotions, I can feel a storm brewing (mixed metaphors, what?).  Right now though, the swirling intangible cloud is comparable to when you are in second-grade art class and don't yet fully understand the color wheel and so mix All of the colors together and get... a muddy sort of grey?  That's not pretty at all.  Nor is it possible to discern one color from another.  Nor am I sure what I feel or even what I want to feel.

So I blame the cosmos for messing with my chi (qi).   Although in fairness, I have completely lost or am ignoring my inner peace.  I know it used to be there...  I read other blogs or hear from friends and see their amazing news, their daily stepping out to meet the day head on, and I wonder what I am missing right now.  I have accepted and am generally no longer inhibited by the cancer, but the next step is eluding me: the maintaining of the found or acquired peace in daily living, throughout the mundane and the frustrating everyday annoyances.  People survive.  They get through, somehow.  They smile, then laugh, then move on, if they can.  If they can't, hopefully they are happy now.  I am learning just how much of a challenge life can be, but it is still wonderful.  I am still sitting here next to some of my photos, in a sun-yellow wrap, watching a candle flicker on my desk, and it is still beautiful and hopeful.  So there's that.  There will always be that.  Well, that, and my ramblings...  In the meantime, hopefully you have your own      Peace.

Saturday, November 21, 2009

A rant. And a bit of a rave.

Warning: I am in a bit of a foul mood.  I assume no responsibility for transferral of said mood to others who might otherwise be in a good mood.  Read at your own risk.  Thanks!

Why in the name of all things worth fighting for am I getting sick?  Again!?  It is not okay, and I am not okay with this.  All I want and have wanted for the past three years is to be healthy and to stay healthy.  Sure, sure, yeah, yeah, there is no more cancer in me.  I am "healthy."  But this death-cold is getting ridiculous.  It has been a year since I finished any and all cancer therapies, and yet here I am, still battling the Plague almost every other week.  According to my doctor, it is possible to still have a lowered resistance to infections maybe three to six months following treatment.  (If anyone has any other science to refute this, please, share....)  At this point, I should be completely in the clear.  I should not be cutting my runs in Half because I cannot breathe and I do not have the energy to push myself.  Perhaps it is the running that is doing me in...?  But no!  Not yet, anyway.  According to Runner's World, running can actually boost your immunity, at least until you start running longer than 90 minutes, after which point it inhibits immunity.  But I am barely running 30 (40 if I'm lucky and have eaten) minutes.  So.  Running, out.  What else is there?  I wash my hands like a maniac; my job pretty much requires constant hand-washing.  I usually get at least eight hours of sleep, often more.  I drink lots of water and eat generally well.  Why, then, am I Still Getting Sick?  Gaaaahhh.

And a rave:  I have always sort of alluded to this, but now I am going to lay it all out there.

I have not gotten through treatment and post-treatment and after post-treatment by myself.  My friends have been there for me.  My family has been indescribably amazing.  Even though it was often difficult living at home and then dealing with my parents' concerns long-distance, I would not have been able to do anything without my mom and my dad's support.  And finally, just about two years ago, I started seeing a psychologist.  Once I returned to school after my major treatment, I struggled to assemble some new sense of self, and I felt desperately alone.  I needed professional help, and while it was very hard for me to admit I could no longer handle everything alone, it was also a huge step that I sought therapy.  I saw my psychologist up until the week I left Boston this past July, and I cannot imagine what would have happened to me if I hadn't started working with her.  Friends and family can only offer so much empathy, and I was failing at readjusting.  She helped me to flesh out and at least attempt to resolve a lot of cancer-related issues and more than a few issues exacerbated by cancer.  One of the major revelations and acceptances was that I was/am depressed, and the cancer was making it worse.  So a year and a half ago, I started taking anti-depressants, and they have made such a tremendous difference.  I did not want to start taking them; again, I thought I could handle my emotions on my own.  The last thing I wanted was to start taking another drug, especially one that would affect my mood.  I figured I could bring myself out of my depression on my own.  Alas, I really couldn't.  So, pills, therapy, family and friends.  My survival kit for post-cancer treatment ailments.  I am still working through most of my issues, and I am still struggling with depression.  Somehow, I don't think that is ever going to go away.  Every day requires a concerted effort to push through, to smile at the stupid little stuff.

I am and have always been stubborn.  I downplay and even ignore my problems, whether physical or emotional. My stubbornness is why it took me so long to see a doctor when my bones were all stuffed full of cancer, and it is why it took me six years to seek out help for something I have always struggled with, the depression thing.  But ultimately, we all reach some sort of breaking point, a point where we can either admit we need help and receive it, or else we can block the pain out and let the potential for healing become exponentially more difficult.  I wish I could say I always recognize and ask for help when I need it, but I don't.  Especially when I am dealing with myself.  Maybe that's why I am still getting colds; maybe my body is really saying, "Caroline, seriously, pay attention to me!  Eat more leafy greens!"  But who knows, really.

Well, I feel a bit better now, having gotten all of that out.  haha, I still have a whole treasure trove of concerns I may or may not get around to addressing at some point on here, but I will hold off for the rest of this evening.  (A teaser though:  Chemo Brain!  Real?  Imagined?  Am I going completely crazy?  Am I already crazy?  Why can I not remember that freaking word...??)  Otherwise, I hope everyone has wonderful Sundays.  It is supposed to maybe snow-ish here on Thursday, so we will see what this coming week brings.  Personally, I am hoping for good news of Any kind.  Word.  Peace.

Thursday, November 12, 2009

One down; Four to go.

I realized today that Tuesday was the one-year anniversary of the last drug infusion I received for any cancer-related evils.  According to my doctor, that date, November 10, 2008, is the date from which we begin counting down until five years after treatment finishes.  After November 10, 2013, I will be completely and absolutely and totally finished with Everything cancer-related.  No more PET scans, no more labs, not nearly as much grief.  As I mentioned, I have already (somehow?) survived one year.  Fittingly, today was both an awesome and a God-awful day.  I wish, wish, wish that I was sharing this time with my friends, but they all seem to have scattered across the globe.  Instead, I'll highlight what I do have and what thoughts have been running laps around my mind-track all day.

Awesome: I went for a run today.  I have talked enough about how proud I am of myself that I can do this.  One year ago, forget it.  The resiliency of our bodies will never cease to amaze me.  Respect them!

Also awesome: the cute guy at the gym knows my name!  Granted, he works at the check-in desk, so I should hope he knows my name, but I will take what I can get.  He still said, "Hey, Caroline," with his cute smile, as I walked in.  score.  Too bad I look like a total scrub at the gym.

God-awful: the Chicago Bears.  If you follow football at all, I need not say more.  Either way, I won't say more.  What a disappointment.

Now the other dingy thoughts...  

I think one year ago was the beginning of a bit of an emotional free-fall for me.  I ignored and now have had to deal with a lot of post-treatment issues.  Identity, body image, self-worth...  All problems young adults struggle with, but problems that I could no longer address separately from cancer-specific issues like blood counts and suspicious masses and such.  Everything got rolled together into one big "cancer survivor" blob.  I stuffed the blob away for a while while I was in Washington, DC, but after that whirlwind semester, I was left with a lot of time on my hands and not too many answers.

I have gradually been able to sort some things out.  I am certainly in a better place than one year ago.  I probably won't be spending the next three weeks going to bars instead of doing my homework and dating a crazy, hippie Berklee student instead of, well, doing my homework.  Haha, immediately after finishing treatment, I tried to cram two-years worth of college-ridiculousness into just about five weeks.  For a brief period of time, I was the fearless, feckless college student I secretly wished I always had been.  And then it was over, and I was too busy in Washington to have time to feel cheated of anything.

So I have spent the past few months working through some latent psychological issues.  I'm nowhere near at peace with myself and my cancer, but it has only been a year.  A pretty busy year, but I am in a good place right now to keep moving forward.

This b-log was and is still about the experiences of a 20 year old cancer patient, now survivor (me).  I don't really have any more medical updates, since I finished the majority of that business One year ago.  Hopefully, I will never, Ever have any more major medical updates.  What follows the physical treatment is the hard part though.  Dealing with chemo and all of its associated side-effects stinks, but it is pretty straightforward.  You get a drug; you get sick from the drug; you feel better, eventually.  There are no real precedents for sorting out life as a college graduate/cancer survivor/woman/journalism major/cancer survivor.  People have been through similar situations and prevailed, and I look to them for support and guidance, but they can't necessarily tell me where to find the strength to face tomorrow.  Only I know that (it's in my toes, actually), but verbalizing my struggles still helps me tremendously.  Maybe one day it will help another 20 year-old leukemia patient.  I hope this whole narrative is still somewhat (...?) relatable, if not at least mildly engrossing.  (Although, actually, if it has ceased to be either, please tell me to keep it all to myself.  I'm sure my print journal would appreciate your honesty.)

Otherwise, hooray long post!!  That's what's been on my mind.  I am cancer clean, baby.  Let's keep it that way for a good long while.  Happy weekend to all, and to all a happy weekend.  Peas.

Tuesday, November 10, 2009

Hear, hear.

Every day, so many people receive cancer diagnoses.  Very few of us have any sort of widespread public recognition, especially to the extent of Kareem Abdul-Jabbar, and I thank him for speaking out against the stigmas of cancer, particularly leukemia.  We are all fighting those stigmas and doing what we can in our own ways, whether it be blogging or donating to a foundation or speaking at events.  We put ourselves out there for others to see that we are OK, normal even.  My favorite quote from that article is, "'My first reaction was to deal with it, make that fight for my life.'"  

We are all dealing with it, however we can.  And by humanizing these diseases, all of us are hopefully making it easier for someone else to deal with it tomorrow.  So thank you to everyone who is taking their illness and using their experiences to prove that life does and will continue to go on.  It is still scary, but cancer should no longer be the unspeakable, lurking menace that it once was.  

And that's today's bit of cancer news.  Even basketball stars get cancer.  Even basketball stars.

Friday, November 6, 2009

Who or What is my audience? Do I even still have an audience?

Hooray!!  I have officially reached 1,000 profile views!  Granted, a few of those are mine, but regardless...  I have As Many profile views as Robert Caplin, who is significantly more awesome than me.  Seriously.  This man is twenty-freaking-six years old, and just look at his body of work, already!  How did he get there?  That is what I want to know, as I am sitting in my kitchen two hours before I leave for work at Starbucks.  How does one find success doing what they love?  Talent, definitely.  He is clearly talented.  And drive, determination, all of that.  I know the formula, but I am a little fuzzy (okay, a lot fuzzy) on the execution.  Maybe one day I'll figure out what I want to do when I grow up and what I need to do to get there.  Or I'll swallow my fear and ask for help...  Haha, who knows.

In the meantime, I am slowly figuring out what to do with myself in the present tense.  I work; I run every other day; and I am starting to volunteer.  With whom, do you ask, am I volunteering?  Well.  There is a non-profit organization based here in Chicago that I heard about nearly three years ago when I was home and receiving chemo.  At the time, I was too stubborn and self-absorbed to think much about the group and how it could help me.  Now, however, I have realized, especially after being in Wyoming with other cancer survivors, that this group would have helped me tremendously while I was in treatment, but as it is, it is my turn to help.  So what is this fantastic organization?  Imerman Angels.  It is a cancer support group that pairs current cancer patients with survivors, "Angels."  The mission and intent of the organization is that no person should have to feel so isolated and alone while dealing with cancer.  Somewhere, someone else has gone through a similar experience, and the Angels aim to match those people - someone to talk to who understands.  It was founded by Jonny Imerman who is easily one of the most charismatic and genuinely nice people I have ever met.  I have met him twice now, the second time this past Monday at a fundraiser, and both times I have been completely blown away by his attitude and kindness.  His commitment to and belief in Imerman Angels is so amazing; it is rare to find someone so truly and completely dedicated to helping others.  You meet him and cannot help but want to do everything you possibly can for his cause.

So, I wanted to be a part of this group.  After my experience in Wyoming, I realized how important it is to have a support group who understands what you've gone through.  Also, the volunteers participate in a bunch of different fun fundraisers all the time, and I figure it is a good way to get out there and meet people with similar interests.  It's good, and I am excited to really start helping.

Otherwise, that is about it.  I still think about cancer every single day but no longer all the time, every day.  I am slowly letting it stop controlling me, although it's tough, sometimes, to just let it go.  To learn and move on.  I wish I had a firmer plan for my future; it is really disconcerting not having something to work towards, like a graduation.  Oh well.  Anywhoo, keep on keeping on, and have a spectacular weekend!  I certainly will, and let me know if you would like a free pound of Starbucks coffee.  Word.

Thursday, October 15, 2009

The more things change, the more they Really Do stay the same...

Remember that one time I blogged about how I was listening to Hambone's Blues Party on my jazz station?  Probably not, considering the post was from 27 months ago.  2 and 1/4 years ago, I was sitting in this same papasan chair, listening to this same Blues Party.  Weird.  And yet 2 and 1/4 years ago, I was right smack in the middle of all things cancer-related and chemo-induced.  An interesting point of note.   I wrote, on July 12, 2007, this:  

"I can't walk (jump...) up six stairs without my heart pounding like a maniac. And when I stand up, I get these super cool black-outs. Oh well. Hopefully I'll get a blood transfusion tomorrow, or Monday at the latest. But either way, I think having blood and not having to worry about it mysteriously disappearing is what I am looking forward to the most when this treatment is finished. I can't wait to be able to run again, to be able to jump out of my chair without needing to grab on to something solid for balance."

It is definitely fair to say that having blood is one of the perks of being healthy.  I haven't had a "super cool black-out" in just about two years.  Finally, I am able to run again.  My old-self would probably be pissed at my now-self because it has taken me so long to get consistent with the running, but hey, me, it's been a long road and full of setbacks.  (My old-self was a little harsher and more demanding of itself.)

So here I am on October 15, 2009, in the same place physically but in such an entirely different place mentally, emotionally, and all the other -allys.  I still love the blues, still need the blues to satisfy that part of me that craves, well, the blues, I guess.  Aside from the music, though, very little is the same.  Actually, everything has changed, as well it should have, considering the events of the past three years.

I want to make sure it is clear that while I may be unsatisfied with where my body physically is at this point in my life, namely, living at home, I am happier with myself than I have ever been in my life.  I am more in love with living than I have ever been.  Part of that is definitely attributable to the anti-depressants I started taking about a year ago, but mostly it is that I have grown into myself.  I hope my post from a few posts ago didn't make anyone think I am sitting around moping or depressed or anything like that.  If anything, I am frustrated and angry that I haven't pushed myself harder.  I am scared out of my mind about the future, but I guess I neglected to mention that I am also So Freaking Excited about the possibilities ahead.  We all question our past and our past decisions, to some extent, and for me, that involves wondering if I would be here had I not gotten cancer.  But those thoughts are totally useless and, indeed, tend to be super destructive.  So I'm trying not to go there.  Instead, I am here.  I am here, but I am a totally different person from the me who was here 2 and 1/4 years ago, and I am pretty damn happy with who I am now.

So that's what's up on this rainy Thursday night in the suburbs.  Life and reality get me down sometimes, but I'm human.  It would be strange if they didn't.  So I'm sorry if I brought anyone down with me last week.  It is what it is, and tomorrow is a new day.  Smile and muddle through.  Peace, love, and blues riffs all around.

Sunday, October 11, 2009


2 hours, 5 minutes and 41 seconds.  That is the time in which Samuel Wanjiru, of Kenya, ran the Chicago Marathon this morning.  It was a new course record, smashing the old record by a whopping one second.  It is also the fastest marathon anyone has ever run in the US.  (All facts according to the Chicago Tribune).  Never to be outdone by the men, the Russian Lilliya Shobukhova won in 2:25:56, and this was only her second marathon.

These athletes are Runners.  They are my inspiration, the catalysts propelling me out of bed and onto the street on a cloudy Wednesday morning before work.  Okay, not these two athletes specifically, but I have been reading a whole lot about marathoners and ultrarunners lately, dreaming and wondering if I could ever reach that level of achievement.  So am I a runner?  Someone posted that question after my last post (thanks!), and it has been pestering me ever since, hence the long post reply.

I definitely consider myself a runner, lower-case "r".  I started running as a junior in high school.  When I first started running on my own though, I could only run for five minutes at about a 10-minute mile before I had to take a walk lap.  But I kept at it; it got to the point where if I didn't run my 10, then 15, then 30 minutes, I would feel terrible.  Unfortunately, when I was running in high school, I was running for the wrong reasons, and I was being stupid about it.  Basically, I was running 5 plus miles and then going to the gym for another 20 or 30 minutes on a bike, as well as some basic weight training, but I was only eating maybe 1200 or 1500 calories a day.  I was obsessed with counting calories, and I am pretty sure that is the definition of an eating disorder.  So senior year, I had a revelation and stopped working out like a maniac.  I put on a bunch of weight, and my running went on hold.

For the next two years, it was the same sort of story.  I would take long breaks between running, only to have a resurgence of motivation to go back on the treadmill or run along the Charles River.  I think I was finally in a good spot, health-wise, the summer of 2006, after freshman year.  I ran 3 to 5 miles a few times a week, and I was biking maybe 50 or 60 miles a week.  And I was eating!  Maybe not as well as I could have, but it was an improvement.  After that though, life got in the way, once more.  I found out I had cancer, blah blah, and I have spent the past two years after returning to Boston struggling to gain some consistency as a runner.  It has been very hard for me though, because I was sick so frequently over the past two years.  And then last year's face tumor?  Forget it.

But now, finally, after three years of ill-health, I am starting to feel like a normal person again.  I am very gradually building miles, very slowly increasing my weekly distance.  This time, however, while still partially weight-motivated, I am doing this because I want to.  I love running, tying up my shoes and taking off, not thinking about anything besides my breathing for at least a little while.  I want to be a Runner, and I think, maybe, possibly I can do it.  Maybe not ultras, not yet anyway.  Baby steps.  S0 here is my goal, out there on the Internet.  If anyone wants to help, please, do:

In one year, I want to run in the Chicago Marathon.  That is the first part.  The second, somewhat loftier goal: I want to qualify for the 2011 Boston Marathon.  Qualifying times for the 2010 Boston Marathon are 3 hours and 40 minutes-ish.  That means running about an 8 minute, 15 second mile for 26.2 miles.  I think I can do it.  I figure, since the 2010 Chicago Marathon is in exactly 12 months, if I give myself 6 months to build up my mileage, I can use the last 6 months to work on speed.  I want to do it, to say, Screw You, Cancer.  All I wanted, the whole time I was in treatment and for the last two years, was to feel healthy, to be able to run again.  So here I go; I can run again, and that damn disease ain't got nothing on me.  I hope.

Sunday, October 4, 2009

How old are we, really?

I have officially been kicking and screaming and fighting through life for 23 years.  I don't know if I will be doing it for another 23 years, but I am nonetheless still here, now.  If I do make it to 46 though, who will I have become?  How will I remember these years: so close to a cancer diagnosis, a struggling twenty-something in a terrible economy, living at home, trying to start getting serious about running, so unnecessarily self-conscious?  Will I still be a commitment-phobe, terrified of allowing myself to be vulnerable?  Let it be known and forever out there in the world (read: the Internets) that my biggest fear is that I will grow old as a jobless and achingly alone chubby woman.  The first part of the fear is totally unreasonable, and I know that, but it is still there.  The second part is slightly, if only very slightly, more realistic.  Hopefully this running thing will help combat the very last bit.

It's just that at this exact moment in time, I am so frightened.  None of us can foresee the future; no one knows when or how the economy will recover.  All the doomsayers of the world are predicting terrible things for the earth unless we make drastic changes.  And closer to home, people keep getting cancer diagnoses.  All of the negative "what ifs" are enough to make a person just want to disappear, to give in to nothingness.

It's funny (to me) that after everything I have survived already, I am panicking.  I feel like I'm drowning back here at home.  Dry waterboarding, if you will.  There is a little nagging voice in the back of my head reminding me, if I let it, that this was Never the plan; this stagnation is all Cancer's fault.  When that squeaky voice starts calling out to me, my future seems so bleak.  If I start to let myself give into those thoughts, everything else, all of my walls of strength and purpose, starts to crumble.  Every single day I have to tell myself, almost yell at myself, that this is temporary.  I am only 23; there are many, many years ahead of me, and the vast majority of them will not be spent living with my parents in suburban hell.  I think my difficulty accepting that arises because I feel so much older than I really am.  Perhaps that's a selfish and vain thing to say, but I am already just so tired.

My faith, shaky as it is, is enough for me to want to believe that everything happens for a reason and has a purpose.  I spent more than a few nights over the past three years struggling with the questions like, "why did I get cancer?" and of course, "what am I supposed to do with this?"  Those sorts of queries are important to consider, but they are often unanswerable, especially when the person is still emotionally invested in getting better.  Never before have I had so little direction.  High school was all about succeeding and getting to college.  B.C. (before cancer), college was all about double-majoring and earning money and gaining my total independence.  Cancer was all about beating cancer and getting back to school.  Then school, once more, was all about reconciling who I was with who I thought I should be, and graduating on time.  My goals were short term because I didn't know how to think about the long term.  I could only focus on getting through each day as it came to me.

But now, I can't seem to come up with any long-term goals.  There is too much uncertainty, too many variables.  Currently, I work at Starbucks, which I really do love and am fairly decent at, but I can't stay there forever.  I don't know if I will ever be a professional photographer or if that's even what I want.  Also, cancer again working its sticky tentacles into my life, I would like to do something in the young-adult cancer world, but it is difficult starting over in Chicago, a city with its own and many cancer celebrities.  There is this fun little knot of anxiety pulsing in my chest that had disappeared for a while back when I was in school and focused, but it seems to have returned.  I can almost reach down my throat and pull it out.  I wish I could throw it away along with the two-year old cake from the freezer I tossed earlier today.

AnyWay.  Please excuse my rambling ons.  Ramblings on?  One of them or both.  This is what is on my mind, and this is still my b-log, and everything is connected, somehow, to cancer.  Or maybe it's the weather.  So.  On that note, I hope everyone's weeks are going a bit more smoothly than mine.  Thank you so much if you are still reading here.  I'll be looking to you guys to buy the book when I write it!  haha.  You don't have to read it, necessarily, just leave it artfully placed at an angle on your coffee table.  :)  K, peace.

Thursday, September 24, 2009

Eh? What? What's that? Speak up; I can't hear you!

Or something to that extent...  Prior to September 22, this past Tuesday, these are all phrases you would have heard from me at some point.  Prior to September 22, I had mild to moderate hearing loss in my right ear as a result of the Face Tumor.  Apparently when the tumor melted away (that's the technical term), it caused a bunch of scarring in my sinus area, which in turn closed up whichever ear tube allows for fluid drainage (also the technical term).  Basically, there was a large amount of fluid just chilling in my ear because it had nowhere to go, which meant I couldn't really hear out of my right ear.

Whew.  So.  Finally, after multiple ENT visits and more than a handful of frustrating delays, on September 22, this past Tuesday, I had a tympanoplasty and tube procedure on my right ear.  That really is the technical term.  For those of us who are not certified otolaryngologists, the doctor went through my ear drum and stuck a tube in my right ear.  After some mild sedation that turned out to be some serious general anesthetic and fifteen minutes of blissed out blankness, I can hear!  And there hasn't even been any strange ear-discharge.  Hooray...?  I guess this is the procedure doctors do on a lot of little kids with persistent ear infections.  In yet another example of how things come back to haunt you, I can distinctly remember being maybe five years old and freaked out by the other kids my age who had these weird plugs in their ears at the pool.  I wasn't a very accepting little person, and now here I am under strict orders not to get Any water in my right ear.  Ear plugs, here I come.  Apparently, it is very unusual for someone my age to have this procedure done.  So said my doctor to my mother.  He was a good, nice guy, the doc, but he was kind of oblivious.  Yeah, most almost-23-year olds don't have ear tubes put in.  Most of us don't get leukemia and face tumors either.  Deal.

Regardless, it is so strange to have surround sound in my head again.  I was in Target yesterday, and there was noise everywhere.  I was freaking out a bit because I didn't know what was coming from where.  But I am adjusting, and I am so happy.  I can hold my cell phone up to my right ear again.  I can stand to the left of someone and carry on a normal conversation without having to move to their right side so I can actually hear what they're saying.  I can go to bars again and actually talk to people!  The possibilities are endless.

So that's what's good here.  Also, I'm pretty sure I haven't mentioned this, and I will only do so briefly now, but I am currently living at home and working at the Starbucks in our little downtown.  So I am employed in some fashion, although it is Very weird for me to be living back here again.  So many memories that I would prefer to put in a little box for the time being and let them get dusty....  But I'm getting by, saving money, that whole big deal.  Life is okay.  Hope yours is as well.  Peaves.

Tuesday, September 15, 2009

Disappointment abounds

In a disappointing, albeit not wholly unexpected, turn of events, I did not set off any detectors when I passed through Logan International Airport yesterday afternoon.  As I approached security, I was prepared.  My shoes were in a little tub; I had removed all liquids from my bag; my pockets were free of change.  And I had grabbed a little paper card and stuck it in my back pocket, hoping I would get to use it.  What little card?  The little card I had received five hours earlier at my PET scan, stating this:  "This patient had a Nuclear Medicine Procedure [sic] and may still have small amounts of radiation capable of being detected by radiation monitoring equipment.  The amount of radiation poses no danger to the public and is allowed by NRC Medical use regulations."  In short, I was acceptably radioactive, and I had the card to prove it.

Alas, either those detectors do not, in fact, detect any radiation activity, or the amount of the tracer in my system had diminished enough so as to be undetectable.  Either way, I was disappointed when I sailed through security and on to my gate.  Oh well; maybe next time.

In other news, Cancer-Free!!

Still.  No tumor, blood counts are all normal, no questionable levels of anything in my system.  I was officially taken off of all cancer-related medications, which is so weird, but such a relief.  After two and a half years of so many pills, so many things to remember, I can finally start fully cleansing my system of all those chemicals.  From here on out, I get a PET scan every six months for the next two years, then once a year until 2013, which will be the five-year mark of treatment completion.  Blood work is thrown in there every once in a while, but I can have that done anywhere.  I'll be sticking with Dana-Farber and my doctor in Boston, at least for the time being.  I figure since everything else in my life is so up in the air, it is just easier to know I have to be in Boston every six months, instead of moving All of my records and such to someone new every time I move around.

So that's it for now.  Check back tomorrow or in a few days because I have an important and Long-overdue update on something very exciting.  Hooray!  Okay, peace.

Saturday, September 12, 2009

Quick update!

On my way to Boston for my 6-monthly PET/CT scan.  Hopefully still all clear...  Fingers crossed, and if I'm super lucky, I'll be able to drop down to just one medication!  Good luck and happy weekend to everyone.  Go Bears!

Monday, September 7, 2009

Hey, remember that time I used to blog about my life as a cancer survivor?

Yeah, me too.  Good times.  Good times on the internets.  Well, following certain recent events that I will discuss a few lines down, I feel the need to b-log once more.  I am and have been struggling quite a bit lately with who I am and what's next for me.  Now, I recognize that uncertainty and doubt are pretty much the norm for recent college grads, especially these days when there are so few jobs floating around.  Unfortunately, a wrench was thrown into my works three years ago when my body decided it would be cool to go and give itself cancer.

I am, only now, beginning to feel like everything is catching up with me.  Basically, from the day I was diagnosed until I graduated on May 17, 2009, I did not stop.  I did the treatment thing; then I did the school thing; and then I did the Washington, DC thing.  The past three years are a blur.  I feel cheated of my college years, in a sense.  Sometimes I wish I hadn't been stripped of my innocence and invincible attitude.  Sometimes I wish I could have graduated and moved into some tiny apartment somewhere, barely making rent and living on PBRs and Cheerios.  But wishing never did anyone any good, nor does dwelling on what isn't.

This past week I went to Jackson, Wyoming, to climb in the Tetons with a bunch of young adult cancer survivors through an organization called First Descents.  Initially, I had been more interested in the climbing aspect of the trip than the cancer part.  I want to get more involved in climbing, and I figured this would be a good opportunity to climb in some of the most beautiful mountains in the U.S.  And, hey, I had cancer, so I was eligible for this program.  Bonus.  But I wasn't really thinking about the cancer part or what it would mean to spend five days with other young adult survivors.  I certainly didn't realize how inadequate and lost I would feel among 13 or so other people who have all had cancer and who all seemed so much more together than myself.  Some of the other people there were closer to their treatment than I am, but I was the youngest young adult there.  While I didn't feel younger in terms of maturity, I felt like the person with the least direction.

Over the years, I have gotten pretty good at deluding myself into thinking everything is okay.  I realized out in Wyoming that while I am pretty comfortable with myself, I am still not okay with this cancer thing.  This was the first time I have ever been around a bunch of people my own age who actually understand what cancer really looks like, feels like, smells like, is.  What it means to be in your 20s or 30s with cancer.  It was extremely painful for me to have it all brought home so quickly.  With my friends, I can pretend that I was never sick, that everything is okay.  But at camp, it was inescapable.  Right at the point when I was desperately trying to pretend that none of this ever happened, I found myself smack in the middle of it again.

And you know what?  I needed that so badly.  I needed to be with people who understood.  I needed to hear from someone who knows what I am going through that things will work out okay.  Just talking with them gave me hope and a little bit of peace.  The men and women I met out in Wyoming are some of the most amazing, strong people I have ever met.  And they are all just living their lives.  They have made it past diagnosis and treatment and a few are even a couple years removed from it all.  I am so grateful for their shared strength.  

Wyoming was one of the best times I have ever had, between the climbing and the spontaneous dance parties in the middle of a road and the juvenile humor and the laughter.  So much laughter.  I haven't laughed so hard and so truly in a long time.  It is amazing how just a few people can change your perceptions, even if only slightly.  I am still struggling with this whole cancer thing and how much I want to embrace it right now, but I am not as scared or uncertain.  We have all made it this far, and we will just keep on keeping on.  

"People call us renegade cause we like living crazy."

Wyoming is pretty much a photographer's dream.

Andre, aka 007

All of us together on Jenny Lake at the foot of the mountain

Friday, April 24, 2009

Just thought I'd drop in...

Yes, I know, I am technically supposed to be finished with this blog. But I have come to realize that even though the majority of my treatment has ended, cancer is still everywhere in my life. This morning, for example, I opened up the New York Times website, and this was the story that greeted me:
Advances Elusive in the Long Drive to Cure Cancer
I was very impressed with this story. It is honest without being insensitive. Kolata's story echoes what I heard last year at the CALGB conference I spoke at, that foundations and researches are wary of spending money on radical new trials, and progress is being made only incrementally. I had never really thought about, as well, her point that cancer rhetoric focuses on "cures," and "survival rates" and such. It makes sense from both sides though. Of course we focus on the positive aspects of cancer. No one wants to think about dying, and I'm sure no pharmaceutical companies want to advertise their drugs as "only possibly adding a few more months onto your already truncated life." That's just a downer. And yet, it is all a bit delusional, especially the curing cancer pledge. Even I, who had one of the supposedly "curable" cancers, don't believe a cure is possible.

On the other hand, that in no way means we should stop fighting. Last weekend I drove up to Boston for Boston University's first ever Relay for Life. I think eight or nine hundred people showed up, and we raised near $80,000 for the American Cancer Society. The whole premise of Relay is that people spend 12 or 18 hours walking around a track in recognition of the fact that cancer never sleeps. By the end of the weekend, after the all-night event, catching up with my friends, and two eight-hour bus rides to and from Boston, I was exhausted and sick. But I am so glad that I went. It was amazing to me to see so many people all gathered together in support of a single cause. We all want to keep this fight against cancer going.

Like I said, I don't think there is a cure, but there are certainly improvements to be made. If the slightly misleading rhetoric means that more people will change their lifestyles, that's great, but we need to be brave enough to face the reality of death as well. I guess I just hope that we don't lose hope but that we don't get ahead of ourselves either.

And that's my bit. Incidentally, I am healthy and still tumor-free. Follow-up for me now consists of scans and doctor's appointments every three to four months, gradually every six months, then every year or so for however long my doctor feels comfortable. ALSO. Today, TODAY! was my last day of class/work/college. The DC program finished today, which means that I am finished with college. In four years. Who woulda thunk it.

Friday, January 2, 2009

A brand new year and you know what that means...

Or at least, I hope you know what that means and can please tell me because I have no idea what this new year means for me.  New places; new experiences; new jobs; new relationships; new fears; new stories to share.  

One week from tomorrow will find me excited and probably bewildered in Washington, DC, starting out on whatever adventure the next few months will bring.  This will pretty much be my first time (ever) not really knowing what I'm getting myself into.  This will not be like beginning a new semester of classes, where, yes, the classes may be new, but I generally know how things will go.  I have a vague idea of what I will be doing the next three and a half months: A photography internship where I get to take pictures of and around DC.  An element of my program, the "newsroom," has us students acting as the DC correspondents for a number of small, New England newspapers, reporting and filing stories for publication.  And then we have a class called political reporting, which is about what it sounds like.  This won't be your typical internship/classes study-abroad program.  This is journalism in Washington, DC in the first year of a new and historic and exciting presidency.  This is kind of the beginning of what I really hope is my life after school.

I am scared.  But I am also deliriously excited.  And, oh, hey, I'm also leukemia-free.  tumor-free.  all mass and bad cell-free.  As of December 17, 2008, two years and nine days after my first diagnosis and my last Wednesday living in Boston, all scans were clear and all tumors completely disappeared.  Haha, of course, the universe has never been and probably never will be truly kind to me, and it turned out I actually had pneumonia.  But hey, at least it wasn't cancer...?  I went on antibiotics for a few days, and now I should Finally be all set.  I have a follow-up scan in March, and then another scan every three months for a while, but that is it.  I still have the Fear, but I'm not going to let it run me.  I, instead, am going to start running for real this time.  I am going to bike.  I am going to try and get involved in some sort of outdoors group around DC.  I want to hike!  and kayak on that river that's right down the street from where I will be living.  I will live again without pain or fatigue or the persistent cold that Did Not Go Away.  I will live.  Maybe not as long as some people, definitely longer than others, but I will be alive to see whatever this new year will bring.

This b-log never really became a "blog," per se, in that it never really connected with other blogs or internet sites or activities or interesting nonsenses.  There was very little media, aside from the sporadic photos I put up.  But it served its purpose for me.  It helped me get through two years of chemotherapy and treatment for leukemia and a subsequent face-tumor.  It gave me a channel for my thoughts and hopefully gave everyone reading it some insight into what I've been going through.  I hope these posts have helped illuminate what it's like to be 20, 21, 22 and dealing with cancer treatments.  I cannot say my experience is necessarily similar to anyone else's, because everything that I have felt and experienced and grown from has been unique to me.  That said, I'm sure a lot of what I have gone through is not uncommon for other survivors my age.  So, you know, we're not all wimpy, sad, bald kids to be pitied or misunderstood.  We're just trying to get through our days, the same as everyone else.  It is Hard to be a student and a patient.  Good Lord, was that hard.  But it's just another thing to deal with.  Somehow, I did it.  I'm not sure how, really.  Well, that's not true.  My friends helped a lot.  The b-log helped a lot when I wasn't in school.  But mostly it was my desire and drive to be healthy once more, to live to see better days.  I am positive that that sentiment is something we all possess (or, I hope anyway), and so if you ever find yourself where I was just over two years ago, scared and uncertain and alone with a doctor and a hematologist in some nurse's lounge in some strange and sterile hospital, be strong.  (or if you are in a completely different scenario, that's fine too.  The point:)  Have faith in yourself, because when the shit hits the fan, which it is apt to do, you have to be there for yourself.  And you'll make it through.  Seriously, the bad days can't last forever.  They have to change over at some point.  That's what I tell myself, and I think it's generally true.  So.  Good luck.  Good luck with your tomorrows.  I'm around if anyone wants to say hey or chat or cry or laugh or whatever.  I'm always around.  Thank you all for everything.  Peace, pax, I'm out.