A Whole New Monster

Wow, do I feel crappy.  This is really the best word to describe how I feel right now.  CRAPPY.  I’m sorry if the word offends but my body is feeling rather offended with the feeling of crappiness so I think I win.  These last few days after my tenth round of chemo have definitely been the hardest since I started treatment.  It’s beginning to take it’s toll on my body and it shows.

The doctor told me this would happen.  It’s not like I didn’t know it was coming but it’s still hard.  I guess I thought because the first six treatments hadn’t been so bad with the side effects, I was special.  But alas, I am not special.  At least not in the way that I would be spared all the side effects.  Here comes the list of all the things wrong with me right now and be warned; it ain’t pretty.  I suggest you stop reading right about here if you really don’t want to know.

Of course, nausea.  Oh, nausea!  We all know the feeling.  Although I have a big stash of Zofran at my disposal, it still creeps up on me.  The feeling washes over me and it’s all I can do to not lose my cookies.  If you’ve ever had a bad hangover, this is the feeling except its extended by a few days.  Fortunately, the meds do the trick in the end (although too slowly for my taste sometimes) and I’m saved from hugging the porcelain throne for a week.  That’s all I have to say about that.  It makes me feel sick thinking about it.

Then there’s the exhaustion.  I’ve always felt exhaustion after every chemo treatment but this one is a whole new monster.  You see, although I’ve been exhausted after treatment, I never found myself gasping for air like I did this time.  I’ll never forget it.  It was Friday, the day I left the hospital for home.  All I wanted was a long, hot shower in my own house and to slip into some clean pajamas.  I went to take said shower and noted that I felt a bit out of breath just standing there.  I put it out of my mind and proceeded to take the longest shower that ever lived.  As I got dressed afterward, my heart began to beat so fast I had to stop.  A mere walk across the room had made me feel like I’d just run a mile in 3 minutes and I was suddenly gasping for air.  My husband walked in on me panting and asked me what I’d been doing to be breathing so hard.  Absolutely nothing.

My doctor says I should exercise.  Ha!  How the heck am I supposed to do that if I felt like I was gonna pass out after walking across the bedroom?!  Exercise is gonna have to wait until treatment is OVER.  ‘Aww, was it the cancer that killed Cristina?’  ‘Oh no, it was the exercise.’  I can almost hear it now.  No thank you.

This exhaustion also makes me feel like I haven’t slept in days.  I trudge around the house dragging my feet only to plop myself down on the couch to try to take a nap.  Although I am tired, I can’t sleep because with the exhaustion comes restlessness.  My life would be complete if I could get a nap in sometime during the day but that does not happen.  I go to bed at 3am and wake up at 8am.  Not the best night’s sleep but at least it’s something.

There’s also this overall feeling of ‘ick’ that I just cannot shake.  It’s hard to describe but I’ll try.  Do you know that feeling you get when you know you’re getting sick and it’s gonna be the big one like the flu?  That’s kind of what this feels like.  Throw in some nausea and achy bones from an injection I received the day after chemo and voila!  Insta-Flu.  Just like the flu except none of the sneezing or oozing.  Unfortunately, I did get fever after my ninth treatment complete with the chills and everything.  So, it was exactly like the flu that time, but I digress.

My appetite has suffered a bit but not as I thought it would.  I thought at least I could lose a few pounds out of this but it looks like I’ve gained them instead.  The enormous amount of steroids I’m given during treatment is the culprit for both my ginormous appetite and my restlessness.  I eat and eat and still feel like the plant from Little Shop of Horrors.  The problem is that even though I can eat, its not a very enjoyable experience.  Food tastes different.  It feels different.  Certain foods I considered my favorites are no longer that and some textures simply make me sick to my stomach.  Food doesn’t have the same allure it did before like in the cartoons where the smell is a hand beckoning Tom & Jerry to come hither.  I eat to live right now, simply because I have to.

Feed me, Seymour!

It’s officially the third day after my tenth round of chemo and I’m counting down the minutes to the moment I feel somewhat normal again.  It could be one more day or it could be seven more.  At this point, I just don’t know how long it will be.  It feels like an eternity.

Oh by the way, my eyebrows are officially gone now too.

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Chemo Session #10: Are You the One?

Its 6am and I’m in my hospital bed but I can’t sleep.  The hospital never sleeps.  There’s a constant stream of shoes squeaking up and down the hall, nurses coming in at all hours of the night to check my vitals and change out my IV bags of chemotherapy.  They’re just doing their job but it’s messing with my beauty sleep.  The steroids they give me are messing with my body and my sanity.  They make me so jittery like I just drank 10 cans of Red Bull and so my mind begins to race with all sorts of nonsense.  Some of it is silly like I was contemplating asking for another blanket on the intercom in a British accent. Should I use a cockney accent or something more regal like the Queen of England?  Or maybe something like Merry or Pip from Lord of the Rings?  I watched it before I came to the hospital so that explains that.

Anyway, there’s also more important things my mind begins to run away with.  I can’t stop thinking about this chemo session.  It’s the 10th cycle and the most aggressive one I’ve received to date called R-HyperCVAD.  Woof!  It sounds like a part for Artoo-Deetoo.  That’s the little robot from Star Wars and now I’ve made references to not one but two ultra geeky movies so now you know I’m a full-on geek.  I’m going to get on with what I’m trying to say now.

Preparing for the worst but hoping for the best.

You’ve heard that expression before, right?  That’s me right now.  Preparing for the worst but placing hope against hope for the best.  You see, doctors are vouching that this session will finally put me into remission which will then allow me to receive my life-saving stem cell transplant at MD Anderson.  If I’m not in remission after this, then I don’t get my transplant and God only knows what these doctors have planned for me next.  I hate to think about it but its an inevitable possibility staring me right in the face like a snarling, salivating pit bull.  I have to clarify something. Just because I’m preparing for the worst doesn’t mean I don’t have faith and hope in God that I’ll be in remission.  It only means I’ve learned that I don’t know what God has planned for me.  Too many times in this journey have I not prepared for the worst and the worst happened. That can’t be good for anyone’s sanity.

Still, I hope and pray with urgency to God that this be my ticket to the Promised Land of MD Anderson where it floweth with stem cell transplants and world-class doctors.  I plead with Him day in and day out that this be one of my final hurdles in this never-ending nightmare they call non-Hodgkins lymphoma.  And so I ask:  Chemo #10, are you the One?  Are you gonna be the one to grant me the news I’ve been waiting for?  Will I hear the ever-beautiful word ‘remission’ soon?  So many questions but I try to pace myself.  I try to remind myself that this is not about me.  There is a plan for my life and what it is, I still do not know.  My goal right now is just to take all this one day at a time.  Like that old PSA said, “The mind is a terrible thing to waste,” and I don’t plan on wasting it on the could have’s and would have’s of life.  That’s for chumps.

Instead, like I said, I shall look forward and prepare for the worst but hope for the best.  There’s a hurricane a’blowin’ in the gulf of my life and I’m sure as heck gonna board up my house. Hopefully, it’ll pass by my house unscathed.

Hurricane Cancer

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The Road From My Head to My Heart

I think waiting has got to be one of the most torturous things a human being can be made to do be it for a good thing or a bad thing.  Do you not agree?  As a child, I remember the grueling wait for the end of the week to see my Saturday morning cartoons.  It couldn’t arrive fast enough.  The wait of every day as my parents would say, “No, the trip to (insert fun place here) is NEXT week.”  It was hooooorrible!  Then growing up, the waiting for typical teenage things like graduation and college.  Then adulthood, waiting in nervous anticipation for my wedding day.  Waiting to close on our first home.  Those days never seem to arrive fast enough and yet they’re here and gone in a split-second.  Oh, how I long for the good ol’ days of waiting for normal, beautiful things.  These new days of waiting on the dark unknown, not so much.

“It’s really not that far, why’s it seem so far?  The road from my head to my heart.”  The lyrics explained my sentiments exactly this morning, and every morning for that matter.  My head knows that this is just a season in my life, that its not forever.  My head knows that this too will pass.  Try telling that to my heart.  My heart is another story.  It longs for this nightmare to be over and to at least start a new normal since the old normal has long gone.  My heart has been used as a punching bag and is asking for mercy in what it hopes are the last rounds of this fight.  The road from my head to my heart seems so far and they can’t seem to get on the same journey or even in the same vehicle.

What is wrong with me?  Nothing.  This is all very normal or so I’m told.  Will my head and my heart ever come together again in a somewhat symbiotic relationship?  Again I know they will, but when?  The road from my head to my heart is strewn with question marks and clean-up seems like a gargantuan task.

And so, I wait.  Wait for answers to my questions and resolutions for my health.  Just how do I do that?  I suppose I’m doing what I can by keeping busy with what God has placed in my path.  A distraction if you will.  Isn’t that how our parents kept us from driving them absolutely crazy with questions and the inevitable ‘are we there yet?’  I’m trying to busy my hands with my knitting and my feeble attempts at learning guitar.  I’m trying to busy my mind with books and season DVDs of Big Bang Theory.  Most of all, I’m trying to busy my spirit with His spirit.  I imagine if I focus my energies on the One who created them, I’ll have a much higher success rate.

Its not an easy task when many days I don’t feel particularly happy with Him.  I’ll say it:  yes, some days I’m angry at God.  My rage comes tumbling out of me directed at Him in fits of tears and cries.  This morning was no exception.  By the end of my tantrums though, instead of The Hulk, I’m more like a washed up kitten.  How can God stay mad at that?  I’m pretty sure He doesn’t.  He just shakes His head like our parents did when we threw our temper tantrums as children.  “I got all day,” my mother would say and so does He.

That’s the only thing that makes any of this somewhat bearable.  The fact that I’m not gonna get in ‘trouble’ and that He’s waiting for my process to process.  Even though my head and my heart can’t seem to get along on this rough road, He’s there in the middle of it all, driving the car.  I hope we get there soon.

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If you would like to listen to the song that inspired my blog today (Head To My Heart), it’s a free download today from Noisetrade:

http://www.noisetrade.com/elenowen

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Now it IS me.

Defeat.  I thought I knew what defeat felt like before but I had no idea.  Not even close.  When the doctor said that he would be unable to proceed with the stem cell transplant, it felt like I had been broken into a million little pieces all over the floor.  So many pieces that they would never all be found and there’d always be pieces of me missing.  I felt like Humpty Dumpty and I’d never be put back together again.  The stormy, thrashing weather on the drive home from Houston after this news mirrored my insides:  a torment of tears and lightning pangs of hurt and anger.  An inescapable flood of defeat.

I’d initially left my hometown for Houston in a sea of tears as well.  Crying because I would be homesick for two months but also crying because I was headed for salvation.  Or so I thought.  Houston was my promised land.  It promised just one more round of hideous chemo and my lifeline:  my stem cell transplant.  Two more months until I would be able to join the elite circle of cancer survivors and enjoy the rest of my life cancer-free.  I was ready to cross my desert and enter Canaan.

But in true Moses fashion, it was not to be.  At least this time around it wouldn’t be.  Victory had slipped through my fingers the way sand does when you clutch it too hard in your hand.  The harder I had tried to hold onto it, the faster it had slipped away.  I felt like a failure.  I’d failed God, I’d failed my family and friends, and I’d failed myself.  I hadn’t tried hard enough and now I was sent back home with my tail between my legs.

My PET/CT scans had shown that although the mass in my left hip had disappeared, the mass in my chest had done the opposite: it had grown.  Despite high-dose chemo and my efforts to remain positive, the stupid thing had grown.  What the heck??  I was supposed to be in remission and ready for one more round of chemo before my transplant and now I had to go back home empty-handed with nothing to show for it?  How was I supposed to face everyone?  I’d said my goodbyes, said my ‘I love you’s’, and left everyone with hope and expectancy.  How was I supposed to explain why I was back and starting again from square one?  This was so unfair.

Now I’m back home and its been a couple of days since this news.  I’ve been in hiding and refuse to answer my phone or see very many people.  I don’t like to see pity in anyone’s eyes for me or have to explain a hundred times over why I’m back home and not in Houston.  Its selfish, I know, but I have to do it or I will go clinically insane.  My sanity at this point requires selfishness.  I’m now waiting for a panel at MD Anderson to review my ‘aggressive’ case this coming week and make a recommendation as to what type of treatment should be next before trying again for the stem cell transplant.  In the meantime, a blood-typing kit has been sent to my only sibling, my little sister, to see if she is my perfect match.  A week will tell us whether she is or not.  The search for my perfect match has begun.

Oh, the irony.  To think that I’ve been campaigning for people to sign up for the bone marrow registry saying that it could have been me that needed a donor when all the while, unbeknownst to me or anyone else, it WAS me.  Now it IS me.  It feels like a sick joke.  Note to el diablo:  it is NOT funny.

I’m due back at MD Anderson in about six weeks to re-scan me to see if this upcoming chemo has finally done its job.  In a perfect world, my sister is my perfect match, I will be in remission in six weeks, and I’ll be able to get my transplant.  But I do not live in a perfect world and although I am optimistic (I really am), I’m also a realist.  I’m a realist in that nothing ever happens the way WE want it to, it happens the way God wants it to and His way is never easy.

Although this is one of those major setbacks, I know I have to keep on and keep trying.  Life is all one big struggle anyway but its also beautiful, no matter what.  Every day that I get to breathe is a gift and I am grateful still.  Today my struggle is with cancer, who knows what struggles tomorrow will bring?  Everyone has their own desert to cross at one point in their lives and this one is mine.  My time is now.  Now it IS me.

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The Human Will

We were stopped at the quiet intersection and the traffic light turned green.  Although it was green, my aunt didn’t move the car as we observed what looked like a homeless man crossing the street in front of us.  He was dirty and trudging his feet along the pavement almost falling more than a couple of times in a drunken stupor.  He held a bottle wrapped in a brown paper bag and had no idea we were even waiting for him to cross.  The four of us in the car were watching him and shaking our heads in both pity and disbelief.  The scene we observed was in stark contrast to the mission the four of us had just accomplished minutes before.

My aunt Iris, my cousin Ajia, my photographer extraordinaire friend Jade, and I had set out about an hour and a half before to take Ajia’s senior pictures for her high school graduation.  My cousin had brought along about a million outfits to change into and looked absolutely beautiful in every one.  Young people look good in everything, don’t they?  We went to the tennis courts for her varsity tennis shots.  We went downtown to capture some casual shots and headed to the Watergarden, one of the most beautiful spots in my hometown, to get shots of her with her glorious cello.  Ajia beamed from ear to ear and posed for Jade with such poise and confidence it was all I could do to keep from crying.  I was 13 when she was born and have watched her grow from a tenacious, adorable little girl into an intelligent, beautiful young lady on the cusp of her life’s dreams and possibilities.  My heart was bursting with pride.  My aunt and I fussed and fawned over her as Jade worked her camera magic into what are sure to be the best senior pictures that ever lived.  The last stop for pictures was at a spot we randomly picked.  Jade took her last shots of Ajia on a set of railroad tracks leading into the evening sunset.  My aunt and I waited in the car as the seagull-sized mosquitos were out for blood by then.  We watched my cousin on the railroad tracks and I thought to myself, ‘How fitting.  To think that railroad tracks lead out of town, lead somewhere else like a journey and Ajia is just about to go on hers.  How fitting.’

We finished up and started driving back home to my aunt’s house.  This is the point in my story when we came across the homeless man.  The stark contrast of one life with so much promise and another life thrown away was so obvious in that moment that we were awestruck.  Had a tragic set of events transpired in this man’s life for him to have fallen so far?  What had happened to his human will to live?  Why did he give up?

The human will is an anomaly.  An anomaly by definition is something that is peculiar, irregular, abnormal, or difficult to classify.  Just as my cousin’s will to succeed and discover herself is growing, this man’s will to live and prosper was dead.  ‘How can that be?,’ I thought.  Of course my thoughts led to my own situation compared to his.  How can I be fighting for my life and every minute I get to be alive and he just throws his away like its nothing, like its worthless?  I’ll admit that then my pity turned into indignant anger.  I did not choose to get cancer.  I did not choose this path my life has taken and yet it was given to me.  I wanted to get out of the car and run up to him and shake him.  Shake some sense into him but what good would that have done?  None I’m guessing.  I see now that not everyone places the same value on their own life.  I know the value of my life has gone up considerably in my own eyes over the past few months.

Not that I didn’t value my life before cancer but those were easier times.  I didn’t think too much about what impact my decisions had or what I put in my body, what I exposed it to.  Everything came easily to me and I had never really worked hard for anything in my life.  How can you value your life much that way?  My theory is that there comes a point in all of our lives where we are made to either care or give up.  But does it really have to come to that?  Why not make the decision early on to care and live your life like each day is your last? To live each day like you mean it, with definition.  I don’t know why I was dealt this hand but I’m doing the best I can.  I refuse to live an undefined life, no matter how long this life may last me.

Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love Him.  James 1:12

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And it starts. Again.

So I completely lost it tonight.  I wasn’t expecting it and I didn’t think it would happen.  Why should it?  Its not something I haven’t been through before.  I promised myself that I would not cry when I started to lose my hair again but the tears came anyway.

It happened at home after the most perfect night out with my husband and family.  We ate dinner out on the water in the most beautiful weather and walked downtown enjoying live music.  I held hands with my husband and laughed and laughed with my family.  Meanwhile, in the most windy city on this earth, my hair was literally blowing away off my head.  Nobody could see it but I knew it was happening and I managed to put it aside all night.  At home, I went into the bathroom to stand next to the trashcan and began to run my fingers through my hair.

It’s astounding how much hair I was throwing into the trashcan.  Clump after clump.  Little bald spots here and there taunting me about the inevitable.  “You’re gonna be baaa-aaald, na na na na naaaaaah!”  I’d gone into the bathroom with the plan of ‘helping’ my scalp shed any loose hairs in an effort to avoid hair all over my pillow in the morning.  Instead I emerged from the bathroom with what had to be the most sourpuss look on my face because my husband took one look at me and wrapped his arms around me.

As he first hugged me, I thought to myself, ‘What is he doing?  I’m perfectly fine.’  As he kept me in his embrace those feelings melted away and gave way to how I really felt.  My face got hot and I kept telling myself to grow up and not be such a baby.  ‘Its JUST hair!’  Over and over.  My eyes welled up and I fought the tears but they came anyway.  They came like a flash flood, both unexpected and unwanted.

But it didn’t stop there, oh no.  As the tears flowed, the sobs joined in.  I began to sob like I hadn’t done so since I was diagnosed almost a year ago.  It was almost a sob of mourning.  In fact, it was. While I’ve learned and gained much on this journey, there are also things I’ve lost that I can never get back.  I’m not only mourning my hair but I’m mourning what it represents.  My husband asked me what I was feeling as I sobbed and I told him I felt tired, I felt afraid, and I felt angry.

I am mentally, physically, and emotionally tired.  My brain feels fried, my body has been run ragged, and my heart has scar tissue from multiple heartbreaks.  Just as I’m losing my hair, I’m losing things I’ll never get back.  I’ll recover but I know I’ll never truly be the same emotionally.  I’ve permanently lost that innocence, that naiveté that comes with never having had to go through something like this.  Unaffected simplicity is gone.  I’m afraid of what I have to do next to live.  I used to think I was fearless and now fear is a constant struggle.  Chemotherapy, nupogen injections, stem cell transplant; its all so overwhelmingly frightening.  Most of all, I’m angry.  I told my husband it would have been better for my hair not to have grown back in between treatments. Its hard enough to see your hair fall out once, but TWICE?  Give me a flipping break!  This is so unfair.

Its difficult for some to understand why its such a big deal when a cancer fighter loses their hair. After all, its just hair right?  Wrong.  While my hair grew back and as I gained weight, I was told time and again how healthy I looked.  Some said they couldn’t tell anything was wrong with me. That’s just it.  I’ve been able to lead a fairly normal life over the past couple of months because I have hair again.  Nobody gawked.  Nobody noticed me.  I was just another person at the mall or on the street.  A bald head is a big red flag that says, ‘Hey everybody, I have cancer!”

I’m in mourning for that ‘normal’ that I’m so quickly losing my grasp on again.  AGAIN.  Hair loss is the first outwardly physical confirmation of ‘I have cancer.’  Losing my hair makes me think of that every time I look in the mirror.  Its a symbol of what I’ve gone through and of what is yet to come. And that is HARD.  That is one jagged, little pill.

My husband held me in his tight embrace, wiping my tears until they stopped and telling me he loved me, hair or no hair.  I think sometimes he knows me better than I know myself and yet he hasn’t run away screaming in the other direction.  In an act of solidarity, he shaved his head bald before mine has had a chance to fall out.  Tonight as I go to sleep waiting for my hair to leave me again, I know I am loved.  “Buh-bye hair!  Na na na na naaaah, he still loves me!”

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Transplant 101

INTRO TO STEM TRANSPLANT

“Intro to Stem Transplant.”  That was the name of the class I took a couple of weeks ago at MD Anderson.  I didn’t get any college credit nor was there a test at the end to show that I passed the course.  I didn’t even have to take it, it was totally optional.  This optional hour and a half class ended up making me think the hardest about anything since I started my battle against non-Hodgkins lymphoma.  It made me ask myself, “Why them and not me?”  I know that sounds weird being that I’m going through this cancer battle and that maybe the question should be inverted, i.e. “why me and not them?”  Let me explain.

You see, this class was simply about information.  Information for stem cell transplant candidates and their caregivers about what to expect and how to prepare the best way possible for the inescapable leave of absence from our homes.  Information about what exactly is a stem cell transplant, types of transplants, health risks, and the list goes on and on.  I was alone in this class and that fact was not lost on me.  Everyone else had someone: a spouse, sibling, son, daughter, caregiver.  It was nobody’s fault I was alone as my father was waiting in the lobby since English is not his forte.  My husband was stuck back home working for the medical insurance I still so desperately need.  In hindsight, I think it was better that I was alone.  It allowed me to really listen to the plight of the people around me.  Yes, my plight is dire but, believe it or not, some of my peers that day in that very room have it much worse.

AUTOLOGOUS VS. ALLOGENEIC

I’ve been asked time and again since I first let people know about my upcoming stem cell transplant if they could somehow be a donor and told that if i needed their bone marrow, they would gladly give it.  I feel so lucky to have people around me that are so giving that they would literally give a part of themselves just for me.  Truly humbling stuff.  I’ll tell you why else I feel so lucky.  For reasons still unbeknownst to me, I don’t need a donor.  That’s right.  The stem cells I’ll be receiving will be from my own blood.  The transplant I’ll be having is an autologous transplant. In short, I’ll get hooked up to an apheresis machine (which resembles a dialysis machine) that will filter the stem cells from my blood and then they’ll freeze those stem cells.  After a high-dose chemo session to stop bone marrow production, those cells will then be placed back into my blood stream with the hope that they will find their way back to the bone marrow and start to reproduce normally.  Its all relatively painless except for that pesky little thing called chemotherapy, or rat poison as I like to call it.

Apheresis: Stem Cell Transplant

There were several people that day in my class that aren’t so lucky.  They need an allogeneic transplant which, you guessed it, requires a donor.  I used to think stem cell transplants were solely for leukemia patients, but I’ve since learned otherwise.  Its also used to treat other cancers such as lymphoma, myeloma, and breast cancer and other non-cancer diseases such as sickle cell anemia, aplastic anemia, various immune-defficiency diseases, and the list goes on.  That day in class, there was a diverse group of us with lymphoma, myeloma, and leukemia.  The instructor asked us to raise our hands if we were having an auto transplant.  Only about half of us raised our hands.  The rest were set to have a donor transplant.  HALF THE CLASS.  That was the moment I found myself asking the question:  “Why them and not me?”

It then became apparent as the class wore on that the chances of finding a donor in the National Bone Marrow Registry or Be The Match, are bleak.  Just as only half my class raised their hand, statistically only half of that remaining half will find a donor.  A quarter of my peers that day in that class won’t find a donor.  According to Be The Match, 10,000 patients worldwide need a bone marrow transplant but only half will receive one.  I almost lost it in class as this horrible truth reared its ugly head right in my face.  I couldn’t imagine the stress that I’d already been experiencing only to be made worse by hoping for a donor, hoping to find that one perfect match that could save my life.  Unimagineable.

THE CHALLENGE.

I left that day with mixed feelings.  Relief at the fact that I don’t need a donor.  Sorrow for those that do.  Anger at the fact that half of them won’t find their perfect match.  Most of all, I felt propelled.  I HAD to do something, even in my own small way.  I went online straightaway to find more information on this whole stem cell donor business.  After perusing the many pages of Be The Match, it was clear.  If people were asking me if I needed a donor, why not have them make good on that and become a donor on the national registry?  Why not try to get more people added onto that list?  Why not?

I knew who I had to ask first.  As soon as I got back into town, I sat my husband down.  I told him about the people I’d met and how lucky we were that I didn’t need a donor.  I didn’t have to ask and he didn’t hesitate.  He immediately asked what he needed to do to be put on the national donor registry.  Needless to say, I was overjoyed!  Be it whether he gets a match or not one day, its enough to know that he is willing to save a stranger’s life.  He put it best in this way, “If it were you, I’d want someone to save your life.”

After this conversation, I knew more could be done.  If my husband would do it in my honor, how many others would do it too?  After all, I could have VERY easily fallen into this category of needing a donor transplant.  That could have been me.  And I’ll take it a step further, make it a little more uncomfortable in here.  You reading this now, yes you my loyal reader, it could be you.  Your spouse, your child, your parent, your best friend, your neighbor, or (ahem) your favorite Zumba instructor.  Cancer knows no bounds and has no respect for those we hold dearest.  By the way, if you’re a minority such as Hispanic, African-American, Asian, Indian, or Islander, your chances of finding a match have just been cut down again.  This Mexican-American right here would be up a creek right about now.  There aren’t enough registry members of diverse racial and ethnic heritage so adding more diverse members increases the likelihood that all patients will find a life-saving match.

So here it is, the challenge:  I challenge you (yes, you!) to save a life.  Get your name added to the national bone marrow registry today, don’t wait.  Save a life in your lifetime.  Why not?  What do you have to lose besides a few replenishable cells?

Yeah I did it.  I busted out the sad puppy, Sarah McLachlan-esque sob-inducing video to further my cause.  So sue me.  But then get your name on the bone marrow registry.  Visit Be The Match and see just how simple the process really is.

P.S.

I’ll be posting pictures soon of my adorable husband with his self-kit from Be The Match to prove just how easy it is.  Cheek (face…just clarifying) + cotton swab = nationally registered donor.  It really is that simple!

P.S.S.

I want to see your pictures too.  Hey I need proof!!

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Sympathy vs. Empathy

I’ve come to a most startling realization: its not all about me.  Pfft!  Yeah.  I know.  How can that be?  And by “it”, I mean the world and it does not revolve around me.  I am not the Sun.  I’ve got a newfound sense of tiny-ness.  I’ve been handed a huge slice of humble pie and that stuff is hard to swallow let alone digest.  I think you get the picture.  Don’t get me wrong, I never really thought the world revolved around me but I was just fooling myself to think that I had even a remote idea of what went on in the lives of people around me.

You see, I always thought of myself as a basically ‘good’ person.  I would give a few bucks to the homeless guy on the corner (sometimes, when I was feeling especially philanthropic).  I would make a sad, sympathetic face when people told me of their troubles and nod as if I knew what they were feeling or as if I really cared.  I mean, I cared but I never really cared.  You know what I mean?  We’re taught (hopefully most of us) as we grow up to be respectful of others, to be kind, to be sympathetic but is it enough?  Myself, I had sympathy down to an art form but I never bothered with empathy.  What’s the difference?

sympathy – Feelings of pity and sorrow for someone else’s misfortune.

empathy – The ability to understand and share the feelings of another.

Can you have one without the other?  I believe you can be sympathetic without feeling empathetic and I would even venture to say that empathy cannot exist without sympathy.  Anyone can be sympathetic to someone else’s plight.  Being empathetic?  Not so easy.  My problem with feeling true empathy for somebody was that, unfortunately, I simply did not understand suffering and sadness until I went through it myself.  This is not to say that this has to happen for someone to feel empathy for others, but in my case, this was definitely true.

Up until January of 2011, my life had been ideal.  I’d never experienced any personal health problems.  I’d never had anybody close to me suffer a serious illness or pass away.  My marriage was (and still is, thank God) wonderful.  I’d never really grieved for anything.  How was I supposed to ever feel any kind of empathy for anybody?  I was empathetically challenged.  As I started to hurtle into darkness and pain with my own health problems, my eyes (both physically and spiritually) were being opened.  My life was turned upside-down and I began to feel what others had described to me long before I ever imagined I would go through it myself.  In fact, I never imagined I would go through it myself.  These things just didn’t happen to me yet there it was, happening to me.

It was the slap in the face that I needed to wake up;  THE pivotal moment in my life where I either embraced it or ran from it.  The moment where I either got it or I didn’t.  I get it now.  I get what pain feels like.  I get what loss feels like.  Anger, fear, resentment, sadness, denial.  Heartbreak. Ohhhh, heartbreak.  They call it heartbreak because it really does feel like your heart is broken; it hurts in your chest.  Your heart throbs in pain and in protest.  These are all things I would never wish on another human being and they’re things that I can’t help but feel all over again when someone in my life is suffering.  These feelings wash over me like a tidal wave and brings their pain front and center.  It is the hardest lesson I’ve learned up to this point but I would never take it back.  It was necessary and I’m grateful even.  I’m grateful that I don’t have to act anymore when I look someone in the eye and tell them that I’m sorry and that it isn’t fair.  I no longer feel like a fraud when I hold someone’s hand or hug them in consolation of their grief.  I’m grateful that I’ve learned its not about me.  Empathy is not about me, its about the person on the receiving end.

Along with my newfound sense of tiny-ness, there’s a stirring in my heart that I’ve never felt before. Its the whole reason I began this blog in the first place.  Sympathy alone does not drive a person to do good for others.  Sympathy alone does not drive a person to fight for a cause.  But empathy! Empathy can end slavery, can start movements.  Empathy can drive One to die on a cross for the sin of the world and carry the weight of it all upon His own back.  That’s the empathy I hope to feel even an ounce of for others.  There’s a worship song with a particular line that describes this sentiment exactly:

Break my heart for what breaks Yours.

What breaks God’s heart?  The world is bleeding and He knows the pain firsthand.  He experienced all the pain and suffering as He walked this earth in human form and died bleeding on a cross.  He knows our pain all too well and it breaks His heart to see our own heartbreak.  My heart now seeks for Him to break it for the things that break His own;  to break my heart for His cause.

You might be one of the enlightened lucky ones that feels empathy for others without having had to go through your own desert and I applaud you.  For the record, I am NOT being sarcastic.  I admire those who, own their own, have known how to be truly empathetic to others.  That, unfortunately, was not something I was able to learn on my own.  Empathy is not an easy trait to come by and its not something everyone wants to feel.  Its not pleasant to feel pained for others and its easier to just say you’re sorry and move on.  Who wants to deal with that?  I once thought this way, that it was simply too much ‘drama’ and I could do without it.  It was only by God’s grace that when I started this battle for my life, that many special people in my own life did not run away from the ‘drama’ and stuck around to suffer through it with me.  He led me to a unique group of fearless cancer survivors to show me true empathy.  God had mercy on my once-hardened heart and allowed me to feel the warm embrace of empathy.

I personally don’t want sympathy; I absolutely detest anybody feeling pity for me.  That is the definition of it, isn’t it?  Feeling pity for somebody else’s misfortune?  I’ll pass on that.  I think I speak for anybody that’s ever gone through hard times when I say that pity is the last thing you want to see in somebody’s eyes or hear in somebody’s voice.  Striving for empathy is the only hope in allowing people their dignity in their grief.  Dignity is sometimes the only thing we have left. Sympathy versus empathy?  I think you get the picture.

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My Secret Fear

Two weeks ago, I had a dream that an old family friend and his wife from Costa Rica, now living in Missouri, came all the way to Corpus Christi to pay me a surprise visit.  The dream was so vivid and  I awoke with tears running down my face from the joy Willy and Zully brought me by their visit.  I was young when they moved away and I haven’t seen them for years.  They’re very special to my family and I but that wasn’t the reason their visit made me so happy in my dream.  You see, a few years after they moved away, Willy himself had battled lymphoma (mantle cell), was close to death, and WON.  He’d come to visit me in my dream to reassure me that I’d be ok and to be strong.  After waking up, I figured I’d had this dream because I’d spoken to him and his wife on the phone a couple of days before and I very much value their spiritual advice.  During that phone conversation, Willy gave me this bible verse in Chapter 1 of Joshua which had given him much solace during his battle:

9 Mira que te mando que te esfuerces y seas valiente; no temas ni desmayes porque Jehová tu Dios estará contigo en dondequiera que vayas.

9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.

He didn’t know it, but that was one of the verses my mother had always repeated to me in Spanish growing up.  I love that verse.  That conversation with them had really gotten to me since Willy knew exactly what I’m going through and Zully knew what our marriage was going through.  After my parents, Willy and Zully are the most faithful and spiritually-connected people to God that I know.

I’m about to Quentin Tarantino this story.  I started from the middle and now I’m gonna rewind to the beginning.

I’m about to reveal the fear I’ve been keeping a secret since I first received my diagnosis.  I’d been harboring this fear for almost nine months.  You could even say I was incubating it which is very ironic considering the fear.  It had grabbed a hold of me and started growing like a weed; ugly and unwanted, and hard to get rid of.  I’d kept this fear a secret from everyone, including my husband.  I think I didn’t even want to admit it for fear of it coming true.  Praying about it was done in silence, in my head.  When my doctor in Houston reiterated to me that infertility after the high-dose chemo I was now facing was a very possible outcome, I became numb.  I’d almost started to accept the fact that I would not be able to conceive.  Almost.

Fast forward to two days ago, my parents informed me that Willy and Zully were driving to Corpus to visit me and spend Spring Break here in town.  I’d already told my parents and my husband about my dream.  I didn’t bother to ask my parents if they’d told Willy and Zully about my dream but I figured they had and that’s why they had decided to pay me a visit.  In the meantime, my baby fever was growing by the day and so was my pain at the thought of possibly not being able to bear one.  The Sunday morning of Willy and Zully’s impending arrival was baby dedication day at my church.  Instead of baptizing our babies as in the Catholic church, we Protestants dedicate our children’s lives to the Lord and promise to raise them according to His word.

My cousin decided to dedicate her 3-month-old baby boy that morning and brought him dressed up in the cutest tuxedo suit with tails.  Dressed to impress.  I watched from the stage at my usual spot among the band as our pastor began to pray for him.  Baby B smiled at him in a way I’ve never seen a baby that young smile at anybody.  His gaze was fixated on Pastor Mike as if he knew what was happening and royally approved of it.  My heart melted.  A couple of hours later, we went out to lunch to celebrate as a family and Baby B was being passed around among all the women, doted on and hugged and kissed.  It was soon my turn and although I was ecstatic to have this baby in my arms, it was bittersweet.  He smiled at me with his double-dimples and I made him laugh when I nuzzled his little face over and over.  As he cooed, I kept thinking, “I hope I can have one of you someday.”

Willy and Zully arrived at my house later that night with my parents along with their four teenage kids, only one of which I knew since they’d moved so long ago.  After the standard hugs, how are you’s, and how have you been’s, we settled into our small living room.  Zully began to tell us how she and Willy had been led by God to come see me and pray for me and they were merely being obedient to His will.  They said that they felt an innate need to do this and that they made the decision to come about two weeks ago after our phone conversation.  “Oh wow,” I said.  “So my parents told you about my dream?”  They looked at me like I was crazy and I looked at my parents, “You didn’t tell them?”  My parents shook their heads no, “We haven’t spoken to them about anything; your aunt is the one who told us they were coming.”  After my initial surprise, I proceeded to tell Willy and Zully how they’d visited me by surprise in my dream.

“That’s confirmation from God that we were supposed to come here,” Zully said.  Of course, I was floored.  I think we all were.  But God does things BIG and He wasn’t done with the surprises.  There was still that pesky secret fear I’d been dealing with and I had no idea I was about to be discovered.  After giving me the words of wisdom and support I needed to hear and relate to, they asked to pray for my husband and I.  Willy, Zully, their kids, and my parents encircled us and Willy began to pray aloud.  Instead of praying for the usual like healing and strength, he began to prophesize that we would hear the laughter of children filling our home, not one child but ‘children’.  He said that God wanted me to know that I would be a mother and for me not to be afraid.  I was a broken heap at the sound of those words.  I had not uttered a word of my fear to anybody, not even to God but He’d heard me anyway.

I was relieved, elated, and completely surprised of course.  There it was.  That was the surprise God had shown me in my dream.  It wasn’t the visit that was going to be the surprise; it was the message He had sent them to give me that was the surprise.  I’ve never once feared for my life since this ordeal began.  I feared the process of getting to that point.  I feared not being able to experience a baby in my womb and giving birth to the miracle that is new life.  Now that the Lord was so merciful to tell me that the desire of my heart will come to fruition, the process doesn’t matter anymore.  Chemo, needles, nausea, hair loss, stem cell transplant:  its a small price to pay for the love of a child and I’ll do whatever it takes to get there.

When he was done praying, I confessed through sobs that I’d been keeping this fear a secret, telling not a soul, tucked away deep inside my heart.  I told them that I hadn’t even expressed it to my husband whom I tell everything, even things we call TMI (too much information).  Willy said he knew in his heart that that was what was instilling fear in me.  I didn’t need to be afraid anymore.  Us women tend to keep such things to ourselves sometimes in order to not upset our loved ones or “worry” them if we feel it unnecessary.  We feel it’s our cross to bear and no one else’s all in an effort to save the people we love most from any grief.

Its no accident that Willy battled lymphoma before me and went through the same treatment I’m facing now.  Its no accident that the people I regard so highly were precisely the ones to bring me the message God needed me to hear.  To think that the Maker of the universe and the stars took the time to orchestrate all of this just for me, a mere speck in His universe, simply mystifies me.  But I don’t need to understand it.  Most of all, it lets me know just how much He loves me and that all this is to serve a greater purpose I’ve yet to see or understand.  I am no longer afraid of what’s to come because I know who’s in charge and I’m so glad its not me.  The Maker of the universe has got this.

Willy & Zully

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I heart MD Anderson.

For the past two weeks, I’ve been traveling back and forth three and a half hours each way to Houston.  MD Anderson has been my destination and in that short time, has literally become like my second home which is the biggest surprise for me.

When my oncologist told me he was referring me to MD Anderson, he might as well have said he was sending me to Auschwitz for all I cared.  I thought to myself, “MD Anderson?!  That place is all cancery and sad!”  I knew for sure it was going to be depressing, smelling like a hospital, and white-washed walls and floors from top to bottom.  There would be mean nurses with squeaky white shoes and way too many sad patients with bald heads and sunken faces.  I knew this for sure.  It was definitely gonna be horrible.

My first contact with anybody from MD Anderson was by phone.  She called me to schedule my first appointment with my new specialist.  To my surprise she was super sweet and super helpful.  She was the one to break the news to me that I’d be spending at least a week or more in Houston for my initial evaluation.  “WHAT?!,” I exclaimed.  “Are you serious?  Why?!,” I asked her.  Turns out, I’d be going through a variety of lovely medical tests so my new doctor could make a more informed decision on how to proceed with the best treatment and the results would take at least that long to come back.  They basically needed me at their beckon call so I needed to stay in Houston.  Fast forward two weeks later and I’m still not done with tests but at least they prepared me for the wait.

I received an email shortly after that call with all the information I would need to get to MD Anderson and my medical record number which I have found out since is basically your second name at the center.  They always ask me to verify it and I can never remember it.  Go figure.  I then received a call from a nice young woman from Patient Services to let me know she’d be the first person I’d be meeting face to face when I arrived at the center.  Upon arriving at MD Anderson with no problems because of the excellent driving directions, the valet greeted us with a smiling face and happy attitude.  To my father’s pleasant surprise, they all spoke Spanish.  As I stepped foot for the first time into MD Anderson, I instantly noted the feel and the atmosphere in the lobby.

There was a cheerful lady directing everyone to the right elevator and floor and she immediately came to my aid after seeing the big question mark I so obviously was wearing on my face.  She asked me what area I was looking for and she knew without hesitation where to direct me.  The lobby smelled of fresh gourmet coffee from the cute, little cafe and smelled nothing like a hospital.  It smelled of mouth-watering food and I later found out it was the Starbucks and Chik-Fil-A located right down the hallway.  There was not a white wall or floor in sight.  Instead calming shades of blue and aqua colored the walls, lush plants adorned the lobby, and there were sofas everywhere dotted with cushy, inviting chairs.  There were huge, beautiful aquariums filled with silly tropical fish entertaining the children.  Most of all, I noticed the people, the patients sitting and walking around.  These people were LAUGHING.  Smiling faces, no frowns, nobody sad.  Sure, lots of them were bald as I expected, but they wore their baldness loud and proud; a symbol of their fight and determination.  Letting their freak flags fly, so to speak.  Right on.  I instantly felt a unique sense of belonging and comfort I hadn’t felt since I started this battle.  Suddenly being among so many people who knew what cancer “feels” like made me feel proud to be a part of this club.

I took my designated elevator up to the sixth floor: next stop, the Lymphoma/Myeloma Center.  More aquariums, cushy chairs, and smiling people.  I made my way to the reception desk to check in and I heard him first.  I heard a man loudly singing a jolly little tune and I think my mouth dropped when I saw him.  I hope it didn’t but I think it did.  My mouth dropped because this bald, older man sitting in a wheelchair, with the frailest frame I’d ever seen was SINGING.  His skin was a sickly shade of green and he had a few lone white hairs sporadically sticking out of his head here and there yet his giddy attitude and presence put a huge smile on my face.  I smiled one of those stupid, mouth-open, toothy smiles that you smile when you see a cute baby or something.  He was patiently waiting for his turn in the line to speak to the receptionist and had no idea what an impression he’d just made on me.  I realized this was the place I’d been looking for and I’d finally arrived.

They didn’t take half as long to call me back as I’d expected and my dad barely had a chance to try his hand at one of the many half-started puzzles on the coffee tables.  My doctor’s nurse was not mean and did not have squeaky, white shoes.  She was a breath of fresh air with a warm smile and a very infectious laugh.  It was apparent that she genuinely loves her job and was happy to be there.  My doctor’s assistant was the next person to meet and he was equally as pleasant.  He asked me all kinds of questions and took notes furiously like he was studying for his final exam.  Everyone from the receptionist, to the nurse and the physician’s assistant repeated to me how amazingly talented my doctor is.  I took comfort in the fact that, apparently, my doctor is not only the head of the lymphoma department but he’s the head of the lymphoma department of the best cancer treatment center in the world and that makes him a pretty big deal.  I had the best oncologist in my hometown and now I had the best lymphoma doctor in the world.  God had provided me with only His best.  My doctor turned out to be just as intelligent as they’d all made him out to be.  He was genuinely concerned with my well-being and spoke to me with all the honesty and clarity I so desperately needed to hear.  The biggest plus was he also spoke fluent Spanish and was able to answer all of my father’s questions with ease.  This was huge for me since its hard enough for me to understand what’s happening let alone translate all the medical jargon for my parents to understand.  Amazing.

I left that day with a completely new outlook on MD Anderson.  Not only had I been completely wrong about what it would be like, I found myself liking being there.  I was actually looking forward to the next time I’d get to visit.  I was looking forward to being among “my people.”  Looking forward to having Starbucks and Chik-Fil-A at my disposal.  Looking forward to the beautiful outdoor patios and gardens on every floor that need exploring.  This was definitely a very far cry from Auschwitz.  Its turned out to be my safe haven away from home.

Did I mention the free, high-speed wi-fi great for blogging on the go?!  I heart MD Anderson.

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