Tag Archives: cancer

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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“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.

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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.

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Completely Oblivious.

Completely Oblivious – Jan. 2011

Yup.  That’s me.  Completely oblivious to what’s lurking in my body, coming to get me.  I’ve always been a relatively healthy person.  My sister and I have had an ongoing joke for as long as I can remember about how she got the short end of the stick in the health department.  She’s had to get braces, a Dark Ages-looking metal contraption to fix her overbite, asthma, a cancer scare, and the list goes on.  Not me.  I’ve enjoyed a lifetime of straight teeth and no chronic health issues.  I think I can even count on one hand how many times I’ve been sick with the flu.

And so, at the time this picture was taken, life was peachy keen and couldn’t have been more perfect.  My husband and I had just jumped into our first adventure in starting our own business, a Zumba Fitness studio in October of 2010.  If you’ve been living under a rock or in a cave, in short, Zumba Fitness is a Latin-inspired dance workout.  Fun and effective.  I’d lost 50 lbs. at this point with the program and was thoroughly enjoying teaching 10+ classes a week.  Not to mention the wonderful man I get to call my husband who made this dream of mine come true.  This was my full-time job and I loved it.  Lucky girl.
Lymphoma was about to rear its ugly head and turn our perfect life together upside-down.  I’ve always liked those crazy rides at the carnival or theme parks that turn you upside-down, the loop-de-loop.  The ones where people look at you like you’ve lost it when you say you wanna do that again.  This is THE ride of a lifetime but I don’t think I want a second go-around.  Call me crazy.
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Its lymphoma…with an ‘L’.

Wow. So this getting to know myself thing is really interesting; not to mention scary. At least to me it is. And this whole blogging thing is REALLY new to me but, I have to admit, painfully necessary.

I was diagnosed with non-Hodgkins lymphoma this year on June 28. Yeah, the big “C” as they call it. Or the “aww, that sucks for him/her” as I used to call it. I told an English-challenged friend of mine what was wrong and he asked, “Isn’t that when you’re like addicted to sex?” How I wished it was just that. “It’s lymphoma with an ‘L’, not an ‘N’,” I replied. Hence, lymphomaniac.

I started this blog for a few reasons:

  1. It’s cathartic.
  2. I have chemo brain and I need to write this all down before I forget.
  3. I facebook WAY too much. Is ‘facebook’ or ‘to facebook’ a verb?
  4. You (meaning my adoring blog readers) oughtta know. Yeah, I know… I heard Alanis too.

So, here goes nothin’. Stupid cancer. That’s “Stupid.” With a capital ‘S.’

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