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

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!”

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!!

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.

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

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.

Super-jaded

So, I met my new doctor today at M.D. Anderson in Houston.  Talk about a know-it-all but that’s a compliment, believe it or not.  Even so, I have no more answers today than I did yesterday.  All I got today were new worries to add to the mix.  You see, my current oncologist had already broken the news to me on Feb. 8 that  he believed I relapsed after my last PET scan showed suspicious activity in the now shrunken tumors.  He explained to me as I cried that I would undergo more intense chemotherapy and a stem cell transplant at M.D. Anderson for at least two months.  My husband and I had gone in not totally optimistic to that appointment in an ill-fated attempt at protecting our hearts.  That little ray of hope we’d been hanging on to broke our hearts all over again.  We cried and moped and felt sorry for ourselves for a couple days.

But, we got it out of our systems and instead started asking what’s next on the agenda for cancer-fighting.  Consequently, today as my new doctor at MDA explained the possible side effects of my upcoming treatment such as infertility, organ damage, and poor quality of life thereafter, I did not cry.  I didn’t flinch and I didn’t tear up.  I probably forgot to blink too.  Why?  Am I becoming jaded?  The definition of jaded according to Google is this:

Tired, bored, or lacking enthusiasm, typically after having had too much of something.

Tired?  Yes.  Bored?  Yup.  Lacking enthusiasm?  Double-yes (pun intended)!  Have I had way too much of this something?  A resounding YES!  I think I might even be SUPER-jaded.  Or is something else happening?  As the doctor went on about my doomed eggs, all I remember thinking was, “Its ok.  Don’t worry about that right now.  Just do what you need to do.”  Or could I have heard that?  It kept popping into my head as my smarty-pants doctor counted off all the ways I was gonna get “jacked up” as a good friend of mine calls it.  It seemed like I was shrugging these things off in a jaded manner because even my doctor asked me if I was really ok.  I’m definitely scared as hell and I should have been quaking in my awesome studded boots but my composure today was inexplicable.  Inexplicable in lowly human terms at least.  I’m not Super-Jaded the superhero.  I wish I were this super strong woman that everyone makes me out to be but, alas, I am not.  I’m just this chick with cancer that asks Jesus to help her everyday.  He totally whispered that in my ear today.  Nothing more, nothing less.  Only what I needed.

At this point, I’m all cried out and I’m jaded in the way that I just wanna get my fight on and get it over with.  Doc didn’t give me any kind of assurance today but that’s just what I needed:  some good, old-fashioned honesty.  Give it to me straight.  Don’t promise me the moon and then just show me your butt.  This is a huge Goliath of a giant I’m facing and he’s not to be taken lightly.  Yes, NOTHING is impossible for God but where’s the honor and glory for Him in defeating a midget?  I wanna GRRR when I’m told by some that “ohh you’re gonna be juuuuuust fine, no worries!”  like its the common cold.  This is not something to be written off or taken lightly.  Cancer is a formidable opponent that claims lives every day and a cancer survivor is a living, breathing testament to the healing power of God.  I respect cancer but I’m still gonna murder it.  It will happen in His time, not mine.  Hey cancer:  I have a tombstone with your name on it, not mine.

Hairy dreams…

So, I’ve been having some pretty interesting dreams lately.  The interesting part about them is not the talking dogs or even the conversations with them.  The interesting part is that no matter who I’m talking to, the subject is ALWAYS about the glorious mane of hair that’s appeared upon my head.  It’s always long and shiny and has miraculously grown in overnight.  I always pull on it to prove to myself and to whoever I’m talking to that it IS real.  “Check it out (tug tug)!”, I say.  “Wow, it grew so fast!”, they reply.  “I told you!!”, as I shake my hair like I’m in a Pantene commercial.  It’s always a miracle in my dream and I even think IN my dream how I hope I’m not dreaming. 

Of course, I always end up waking up with my hands going straight to my head to check for my long hair.  But alas, no luxurious locks to be found.  These dreams are so REAL and I can almost swear my dogs talked to me too although Coby does sound like he says ‘no’ sometimes.  I have this dream at least once a week (not the dogs, the hair part). 

Dreams are so funny.  Hair on my head is what I want the most right now so my brain decides to play this mean prank on me every week.  It’s ok.  My scalp will catch up to my brain soon and then it will have to come up with something else to trick me with.   

I’m so tired of these wigs I have to wear to hide my baldness.  South Texas weather is not exactly conducive to wig-wearing.  I asked my friend Chris something I never thought I would ask EVER.  “Am I hairy enough?”, I asked.  After she stopped laughing, she said yes.  Halleluyer!!  Hence I have come to a decision:  I’m done with wigs!  I have officially grown my hair to about half an inch which is good enough in my book for me to chuck my wigs.  Good riddance.  Vaya con Dios. 

I’ll let you know when the hair dreams stop.  I gather it’ll be soon.

“This is gonna be a test of your patience.”

“This is gonna be a test of your patience.” That’s what my orthopedic doctor told me before we even knew it was cancer. And, oh God, has it ever. Even as I’m writing this entry, I’m trying to be patient. Waiting for my oncologist appointment (again) in two months; the one where he’ll tell me if I’m in remission or not because my first post-treatment scan was inconclusive. Of course it came back inconclusive. That’s just my luck lately it seems. Waiting for a resolution, waiting to exhale.

He said those words to me when he first thought my hip was fractured and even then those words took me aback. It was like my whole life had been a prelude to that exact moment. All my years, all my memories, all my emotions came bubbling back up to the surface. It wasn’t a cancer diagnosis then but I knew in my heart that something was seriously wrong but I didn’t dare speak it or even think it. He blamed it on too much exercise but I knew better. Those words became prophetic and a constant reminder in the months to come that I ultimately was not in control of my life.

My ortho put me on crutches straightaway (early March 2011) and said that he couldn’t tell me how long I’d have to use them. It was just something we’d have to monitor. Can I just say this? Crutches are the ugliest, most uncomfortable, foulest things to have ever been created by mankind not to mention they did nothing for my look. Can I also say that they make your armpits and hands hurt? I didn’t think I’d ever see a bruise on my armpit but that’s neither here nor there. I thought to myself, “Self, if it takes a normal broken bone 6-8 weeks to heal, then you’ll be fine in 8-10 weeks.” Eight to ten weeks came and went and turned into 6 months. Six months of waiting, waiting, and you guessed it, more waiting.

Admission of guilt: I became a bum. My friends and loved ones tell me it’s not my fault but it doesn’t make me feel like any less of a bum. I went from teaching 11-13 fitness classes a week to NOTHING. I watched TV, ate, and slept in that exact order everyday. I waited for anybody to call me or come over since a trip to anywhere that required any walking was out of the question. Crutches and malls don’t exactly go together. Crutches also sink in the sand at the beach.

I even gave up the thing I love the most in this world for a couple of months. For those who know me, yes, there IS something I love more than dancing. I stopped singing on the praise team at my church. There are about six narrow steps leading up to the platform and I was afraid to climb them on crutches for fear of falling on my face. Afraid and embarrassed. Embarrassed because the crutches made a very loud clicking sound every time I took a step. I hated the attention they would draw and I certainly didn’t want any pity. After two months of not singing, I couldn’t wait anymore and I didn’t care if I drew attention or fell on my face. I felt an incredible urging and drawn like a moth to a flame. So gladly I gave in, climbed those steps, and never looked back. My band buddies were there for me every step of the way up and down. I did not fall on my face and have sung almost every Sunday morning since.

Starting with this small victory, God began to show me how to fight for what I wanted and at the same time showing me what He wanted for my life. I couldn’t let my circumstances defeat my purpose.

“This is gonna be a test of your patience.” Such a simple statement at first glance but its taken on a whole new meaning for me. This ordeal has not been just a mere test of my patience but of the strength of my character. Do I allow this to dictate who I am or do I let it only shape who I become? I’ve decided on the latter. God is ultimately in control of my life but I have to make the decision to allow His perfect work to be done. If this is His way, then it’s my way.

By the way, I’m still a bum. A singing bum but a bum nonetheless. I know what you’re thinking. I’m not allowed to go back to work. It’s not a bad thing for me right now, being a bum. It’s the only way God could get me to slow down and re-evaluate my life. I’m still waiting to exhale but at least now I can gladly hold my breath knowing that that first breath will be even more glorious than the first one I took coming into this world. My rebirth is pending.

Darkness.

March 2011 - Hiding the pain as I sat on an ice pack.

(cont. from ‘Listen to the little voice…’)

People will sweetly ask me, “How are you doing, really?”  Its unimaginable to some that living with the word cancer could be anything but ok.  “Are you sure?” they ask.  Honestly, my darkest days were the ones that came before my diagnosis.  Not knowing what was wrong with my body, at least for me, was the hardest part of it all.  Dealing with the fact that I have non-Hodgkins lymphoma was gravy compared to the period beforehand I refer to simply as ‘darkness.’

In the book of Matthew, ‘darkness’ is referred to as the place of “weeping and gnashing of teeth.”  Between the months of March 2011 and June 2011, all of my memories can best be summed up with that description.  I spent my days in pajamas, juggling my time between excruciating pain in my left hip and lower back and shuffling around on my God-forsaken crutches.  I spent my nights screaming into my pillow with endless tears soaking it to no avail.  I spent those months in complete and utter darkness.  No position on the couch or on my bed could ease the pain and no amount of the strongest narcotic painkillers prescribed by my doctor could help me.  It pains me even now to admit that I was popping narcotic pills like they were Sweet-Tarts only to discover to my complete and utter disappointment that they didn’t do a thing.  I might as well have been popping candy in my mouth for all the good they did me.  I never understood how anybody could become addicted to painkillers until I went through my own ordeal.  This in itself was a hard lesson to learn.  I was so desperate for even a moment’s relief, that it didn’t matter to me how many I had taken as long as I wasn’t in that horrible pain.  Fortunately for me (I guess), since the medication didn’t even numb the pain, I gave up on them and avoided becoming addicted to them.  I will never again judge anybody for their addictions; darkness is a formidable opponent that I myself almost fell victim to.

My husband would sit next to me night after night and stroke my hair or rub my back as I cried out in pain, helpless and unable to ease it as hard as he tried.  We even used an entire tube of Biofreeze in one week on my back in an attempt to make me feel better.  Massage therapists, heat pads, ice packs; absolutely nothing worked.  My days kept growing darker and darker and my nights were sleepless.  I was going to my six-week follow-ups with my doctor only to be told that my “fractured hip” was getting better very slowly and to come back in six weeks.  It was hard to understand why if my hip was getting better,  the pain was only getting worse.

Though my days were dark and my nights darker, I prayed.  I prayed with my face on the floor every day and cried out to God over and over to show me His face.  I was persistent; I’d go to church and would trudge up the steps on my crutches every Sunday to sing with the praise team.  The pain I was in must have been obvious on my face because people would stop me to pray for me.  I cried every time.  The church elders and my pastor came to my home and prayed over me.  I was determined to make the Lord move and listen to me and I wasn’t taking no for an answer.  Although I was persistent, I felt forsaken and forgotten.  I knew He could hear me but I couldn’t tell if He cared.  In my darkest hour, when I least expected it, He showed me His face.  Just in time, I experienced the most life-changing, hand-of-God, lightning bolt moment I could ever imagine.

Warning:  If you doubt the existence of spiritual beings, good or bad, in this world other than ourselves, then I suggest you stop reading here.  Doubting Thomas’s need not leave comments.  My blog, my soapbox.

It started out as typical evening.  My husband came home after a long day at work only to find me on the couch writhing in pain as usual.  At this point, the pain was coming and going like contractions might during labor.  Except these “contractions” would last anywhere from 30 minutes to a few hours at a time.  I never knew when they would hit me and how long they would torment me.  After about an hour, the pain went away long enough to decide that we would order in pizza for dinner.  I hadn’t been able to cook a meal in my own kitchen for months because of the crutches and I didn’t feel like eating an omelet or cereal, my husband’s specialty.  I got a call from my dad checking up on me and I invited him over for dinner which he gladly accepted considering my mom was working and he was hungry.  Not long after he arrived, our dinner arrived and we all sat down around the TV to eat.  I hadn’t even gotten through the first slice when the pain came back with a vengeance.

Now, my dad had never seen what kind of pain I’d been experiencing at that point.  He knew about it but hadn’t seen it firsthand.  After I pushed my plate away, I lay down on the couch face down with the usual tears running down my face.  My poor dad watched in horror as the pain grew and my cries got louder and louder and I began to pace the house on my crutches in an effort to alleviate the pain.  In that moment, I remember thinking that I hated for my father to see me this way, crushed and broken.  I could only imagine how he felt in that moment to see his little girl in such agony but I couldn’t keep the tears from coming.  My husband explained to him that this was our daily ritual; I paced the house as he got the ice pack and would beg me to lay down to place it on my back.  After finally giving up on pacing for about 30 minutes, I obeyed and lay on the couch with the ice burning into my back; the burning the only real distraction I had from the pain.  With my hands trembling and my loud sobs shaking my body, my father laid his hands on my back and with tear-filled eyes began to pray aloud.

I need to explain something about my parents, and my father in particular.  My parents, since I can remember, had always emphasized the power of prayer against any kind of problems in our lives.  They always told my sister and I that just as we believe in God, there are also negative forces in this world just as real as God that are determined to destroy our lives and that we needed to be prepared.  “The Word of the Lord is your sword,” she would say, “and the enemy has to flee at the sound of His name.  You have to say it out loud because the enemy can’t hear you.  God can hear our silent prayers, not the enemy.”  My mother is literally a walking, breathing Bible and a pillar of faith.  Growing up, I watched my parents counsel and pray over countless people to help them with addiction, sickness, marriage problems and all the like.  My father would visit a local children’s hospital to pray over the smallest of patients only to receive requests from parents for him to return to pray or to receive news that their child been released in full health.  Now his child was in need.

When I talked to my dad about that night afterward, he said that when he saw my face, he felt angry; angry at himself for not knowing that I’d been going through that and angry at what was causing it.  He’d laid his warm hands on my back and began to pray very loudly.  He got louder and louder and by the time I knew it, he was shouting.  In my pain and in my sobbing, I hardly noticed his shouting but that’s when it happened.  While my father ordered the spirit of pain that had been plaguing me for months to leave me alone, I felt a surge of electricity and my cries turned into something unrecognizable.  I, being fully aware of what was happening and in my full senses, was no longer crying yet the sound coming from my mouth was a blood-curdling scream that I was helpless in stopping.  It felt like something was being eradicated from my body through my mouth and those screams were screams of resistance.  In spite of this and because of it, my father was relentless and kept praying aloud demanding that I be liberated from this prison in His name.  Upon conferring with my mother about it the next day and telling her what time this had all happened, she said that she’d been led to drop what she was doing at work and started praying furiously for my father.  Little did she know that my father was in the throes of a full-on spiritual battle over my body.  My husband, unbeknownst  to me, had stepped outside being led to pray over our house in that very moment.  Almost as soon as the screaming had started, it suddenly stopped.  I’d felt like Atlas for so long with the weight of the world on my shoulders and suddenly I felt free and I realized the pain was completely gone in that instant.  I was exhausted and barely whispered a thank you to my father as I fell into the deepest, most satisfying sleep I’d had in months.  God had planned for my father to be there to witness the worst bout of pain I’d had to date; He’d planned for the most spiritually-equipped person in my life to be there, a warrior prepared to fight for me when I needed it the most.

As I awoke the next morning, I was surprised that I’d slept the whole night through.  Even after experiencing the hand of God over my body the night before, I was a doubting Thomas, careful in my hope that the pain hadn’t just left for one night waiting to come back to plague me as usual.  Yet a full day passed with no pain.  Then another day, and another.  The weeks passed and I was pain-free.  I’d been freed from my prison of darkness and pain and even though I was still on crutches, I rejoiced.  I’d experience soreness sometimes in my hip thereafter, but nothing like I’d experienced before.  This was an ant bite compared to what it was before and nothing a pair of Advil couldn’t fix.  This was the normal type of pain associated with a fractured bone that I should have been having from the beginning.

Sure, my cancer diagnosis would follow soon after, but I’d already been freed from my prison.  I’d already experienced the healing hand of God and I knew that even cancer would not be able to consume me.  If even all-consuming darkness hadn’t done me in, stupid cancer stood absolutely no chance.  Darkness is the worst cancer of them all and God had already given me victory over it.