Category Archives: Musings

2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

4,329 films were submitted to the 2012 Cannes Film Festival. This blog had 17,000 views in 2012. If each view were a film, this blog would power 4 Film Festivals

Click here to see the complete report.

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The Blame Game

When something bad happens to us, who’s to blame?  Or what is to blame?  It seems like there should always be something that caused it, therefore possibly providing a way to fix it or at least a way to come to terms with it.  But, what if sometimes, there is nobody to blame?  What if there is no explanation for it?  What then?  How do we get past that?  There are already so many question marks in this one paragraph alone.  These are the types of questions that have been swirling around in my mind since this journey began.  Apparently, I’m not the only one.

About a week and a half ago, my chest port was removed and replaced with a CVC, or a central venous catheter to prepare me for more chemotherapy and my bone marrow transplant.  My husband, mother, and sister came up to Houston that weekend to visit with my father and I before I was admitted into the hospital.  I’d been told at the hospital not to let the dressing around my CVC get wet when I took a shower.  That Saturday night, my husband and I made a trip to the nearest pharmacy to arm ourselves with some plastic Ziploc bags and medical tape to rig a waterproof seal for the CVC.

My mother and I went off into a guest bedroom at my uncle‘s house where we were staying to get the CVC covered up.  It was not as easy as we thought it was going to be and my mother was having a hard time covering it up.  As we both started getting annoyed, she asked a question aloud that alarmed me.  “What did I do wrong?” she asked.  I just stared at her because I knew what she meant.  “Did I not breastfeed you long enough?  I only did it for a week.  Maybe I should have done it longer.  I should have tried harder.”

I couldn’t believe that she was feeling this way.  “Mom!  You didn’t do anything wrong.  These things just…happen,” I replied.  I felt like crying so I stopped talking so that I could swallow the knot that had formed in my throat.  I didn’t want her to feel more guilty if I started crying.  She didn’t say anything else and proceeded to finish covering my CVC.  We both decided not to talk about it and tread into those waters but I knew she still felt like she was to blame.  I knew nothing I said would make her understand that none of this is her fault.  I guess any mother would blame herself for their child’s medical problems even if it’s completely unfounded.

Just as my mother blames herself no matter what I tell her, I have wasted so much time trying to figure out what was to blame for this or at least to understand why this happened to me.  Why me?

After much soul-searching, praying, and screaming at God for being unfair, I find that I still don’t have the answers to those questions.  Now, I’ve come to accept the fact that I might not ever know the answers until I reach the pearly gates of heaven one day and get to ask God himself.  I imagine it would go something like this:

Me:  “God, why did I have to go through all that pain and suffering?  What was the point?”

God:  “It’s not all about you.”

Me:  “Oh, ok.  Well, thanks for letting me into heaven.”

At least that’s what I see in my meek mind’s eye.  My husband gave me a quote by Oswald Chambers a couple of days ago that much more clearly explained what is going on in my life:

“If you are going to be used by God, He will take you through a number of experiences that are not meant for you personally at all. They are designed to make you useful in His hands and to enable you to understand what takes place in the lives of others. Because of this process, you will never be surprised by what comes your way.”

When I first received my diagnosis of non-Hodgkin lymphoma, my doctor knew what I was thinking without me having to ask.  He looked me in the eye and said that they still didn’t know what caused lymphoma or a lot of other types of cancer for that matter.  He told me that I hadn’t done anything wrong and that these types of things “just happen”.  I’d never experienced such personal tragedy but it’s definitely been an eye-opening experience.  It awoke me from my spiritual coma and has allowed God to use me as a tool for His kingdom instead of going through life blinded to others’ pain and suffering.

This trial has awoken a deep-rooted passion for others, like myself, in desperate need of a stem cell or bone marrow transplant.  Where before I knew nothing and cared not about it, I now yearn to tell anybody who will listen to me about the immense need for donors.  Should I ‘blame’ anything or anybody for something so good?  On the other hand, when it’s something good, we look for someone to thank not blame.  So, I thank God for this.  I don’t blame Him or anyone else.  I don’t blame myself.  I don’t blame anything for what is happening right now.  It’s all about the bigger picture.  It’s not about me.  Perhaps the picture is too big for me to see right now.

To clarify, I am not perfect.  I have my good days and I have my bad days.  The bad days are full of worry and doubt and it’s only human.  On one of my particularly bad days, I was watching Oprah’s new interview show where she was interviewing rapper 50 Cent.  You’re probably wondering where I’m going with this and what the heck does 50 Cent have to do with any of this.  It turns out he’s a pretty deep guy.  He’s been through some intense, life-threatening situations which Oprah asked him about.  He replied:  “Either pray or worry.  Don’t do both.”  He said that God has a plan and he used to have issues with the plan but it doesn’t make sense to worry about it.

So, I’m going to try this ‘pray but don’t worry’ thing as best I can and like 50 Cent says, “we’re gonna party like it’s your birthday!”  Hey shorty, T minus 4 days until my transplant birthday.

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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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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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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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.

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My Last Chemo!

Sooooo… today is my last chemo treatment! Since it’s Halloween on Monday and I figured I would be in no mood to dress up, I came to my last chemo session as Mrs. Voorhees: the Cancer Slayer. Complete with my lucky, bloody, cancer-slaying machete (thanks Chris!). Too bad I’m the only one who came dressed BUT it did raise spirits and laughter! Mission accomplished.

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Chemo Week – Part II

(cont. from Chemo Week – Part I)

As I’m writing this, its the Thursday right before Halloween and I just had my pre-chemo treatment today.  Tomorrow is Friday, the big day.  Its the ‘big day’ because its my last round of chemotherapy.  There’s an ominous feeling of nervousness in the pit of my stomach being that this weekend is All Hollow’s Eve and the last round of chemo was really hard on me; physically, emotionally, and spiritually.  BUT, although there’s butterflies in stomach, there’s also a beautiful, bright light at the end of the tunnel that I can finally see.

I lift my hands to believe again,

You are my refuge, You are my strength.

As I pour out my heart, these things I remember,

You are faithful, God, forever.

Let faith arise.

This song has been in my heart, its been my anthem and my inspiration throughout this whole ordeal.  I even made it my ringtone!  I was lucky enough to be able to see its songwriter, Chris Tomlin, sing this live in concert last night, the night before my last round of chemotherapy.  No coincidence, I know.  God has a beautiful and grand way of letting us know that He loves us by arranging things perfectly, just in time.  I’d been struggling mostly emotionally and spiritually over the last couple of weeks and this concert was like I’d been thrown a lifesaver at a critical moment while trying to keep my head out of water in the roughest sea.

I was liberated of the heaviest weight on my shoulders I’d ever felt in my entire life.  The night’s speaker, Louie Giglio, spoke of a time in his life where a dark cloud plagued him, resulting in many sleepless nights.  I knew it in my heart when he said it:  I’d been dealing with my own dark cloud.  Like I said, just in time.

Friday is chemo day and I get my big, purple Zumba bag ready:  Kindle (check), tabloid magazines (check, because I HAVE to keep up with my Kardashian news), headphones (check), I-pod (check, complete with the latest Zumba tunes), and my new lime green blanket (check, courtesy of my thoughtful friend Mariann).  Its gonna be a LONG five hours at the cancer center.  I’ll give you the short version.

Since the needle is already in place from the day before from pre-treatment, I don’t have to worry about another needle-stick.  Whoop uh dee doo.  The nurse flushes it out again with the skunky stuff and hooks me up to my first of about 5 different IV bags of chemotherapy.  I joke with the nurse that they’re giving me rat poison, just enough NOT to kill me.  They start me with anti-nausea medication because who wants to see THAT on the floor?  Or anywhere for that matter.  The whole process is really not that bad until we get to the fourth bag about 2-3 hours into the treatment.  My favorite!  Its set at a very fast drip and its the only one that affects me the moment it gets going.  You know that awful feeling you get when you snort too much water accidentally up your nose?  The one where it hurts your nasal cavity and travels up your forehead and over the back of your head?  Yeah, that’s the lovely effect I get EVERY time from this particular IV bag and it lasts for about a week thereafter.  I wish my pee would just turn pink like it does when I get the Kool-Aid red bag…I could live with that.

The mood of the chemotherapy room depends on the day and who’s there.  Sometimes its quiet, sometimes its full of laughs, but it’s always full of hope.  We smile at each other even though we don’t feel like smiling.  We encourage each other because its like we’re encouraging ourselves.  My buddy Albert always comes by my recliner to say hello and tell me everything is gonna be alright and I know he’s right.  Everything is pretty ho-hum throughout the whole process and I’m ready for it to be over when the nurse comes over with the blood pressure gauge.  YES!  Time to go home and EEEEEAT!  Instead of losing weight, I’ve unfortunately gained it due to the insane amount of prednisone steroids I have to take after each chemotherapy session.  Oh well, I would much rather gain weight than have my life cut short.  I can always lose the weight, but I can’t come back from the dead.  I’ll leave those miracles to the Son of God…I’m not that talented.

The nurse flushes out my chestport again (skunk)  and takes the dressing off my chest.  SWEET RELIEF!!  The itchiness can finally be scratched and my skin can breeeeeef!  The nurse gives me an order for lab work that I need to have done before my next treatment along with an appointment card for my follow-up with my doctor.  I high-tail it out of there with my posse (my one visitor I’m allowed) and head for the nearest exit!  Being that tomorrow is my LAST treatment, I have no idea how tomorrow’s session is gonna end so my curiousity has been peaked.

I go to my parents’ house usually as the effects of the day are too much for me to be alone at home.  I try to keep ahead of the nausea with medication but it sneaks up on me.  That snorted-water feeling remains for the entire week along with the nausea.  My fifth round of treatment resulted in the most instense case of chemo brain or brain fog since I started the first treatment.  I walked around in a complete zombie-like daze for an entire week with my husband and friends constantly having to repeat themselves.  And even then, all they got in return at times was a blank stare.  God bless their patient hearts!  Try as I might, I could not make my way through the fog that clouded my mind.  I have two words for you to describe chemo brain:  Patrick Star.  If you’ve ever watched Spongebob Squarepants or have a child under the age of 10, you know exactly who I’m referring to.

Patrick Star

This is your brain on chemo drugs.

I think I’m gonna start a campaign to make Patrick Star the official spokestar for chemo brain sufferers everywhere.  Believe me, I can relate to that guy.  After about eight days of nausea, snorted-water head, and chemo brain, I finally start to feel like myself.  The nausea eases, the snorted-water feeling goes away, and the fog begins to lift.  But my head is still bald.

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Why is it bothering me so much?

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I heard about Apple CEO Steve Jobs’ passing while I was on my iPhone. How ironic. His life was claimed by pancreatic cancer and that hit me like a freight train. True, there have been other celebrity types that have passed away from cancer since I was diagnosed, but none have affected me like this one in particular.

I think it’s affected me because I looked up to Steve Jobs and his genius. A college dropout, he started a company from scratch, built it up, and got fired only to be re-hired when it started to flounder. He gave Apple a much needed face-lift. Steve Jobs knew what we wanted before WE even knew what we wanted. And don’t even get me started with his little project, Pixar.

He fought pancreatic cancer for eight long years and it showed on his face and body. All the while though, his innovative mind never took a break. Since 2003, the year he was diagnosed, Apple has continued to produce new and innovative gadgets and kept consumers on the edge of their seats for what’s next.

I saw a video last night of a college commencement speech he gave in 2004 that really humanized him. He was not just Steve Jobs, Apple bigshot. He was Steve Jobs, a dreamer, a loving husband and father, a true family man. He spoke of the intense love he had for his wife and how he truly loved his job. He urged the graduates to find something they love to do and not to live their lives in regret. He told them how he had been diagnosed with pancreatic cancer the year before but that doctors told him he would be ok since he’d had surgery to remove the tumor. That hit me like a ton of bricks. He was supposed to be ok.

I loved what he said to the grads with this quote. Truly the way to live your life:

Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

Well said.

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