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Girl In the Mirror

Hello, fellow readers and bloggers.  I know its been a while since I’ve said much about anything.  Starting the week after my transplant, my days have run on and on against each other and I don’t even know what day it is quite often.

TMI moment coming up:  Stop right here if you don’t wanna read about it.  My soapbox, remember?  Ladies and gentlemen, I have been suffering from various viruses and GVHD. These have all caused and continue to cause severe diarrhea and nausea with vomiting.  Which all course has lead to me losing so much weight and three subsequent hospital stays.  Sixty-six pounds lost to be exact at this point.  I know what you’re thinking, especially you girls!  You will not believe how many women have told me how good I look.  GOOD??  I usually just nod and change the subject.  Listen up ladies, I would much rather have lost weight the right way or be a happy, healthy, chubby bunny.  Had I been given the decision to lose the weight via my own will power or because of a horrific disease, I would have definitely picked the first one.  So please don’t compliment me on the weight loss.  Its not something I’m particularly proud of.

My transplant day of November 16, 2012 was my miracle day.  God gave me a second chance at life through my own father’s stem cells.  Little did I know that that gloriously, happy day would turn into the most nightmarish months of my life.  I cannot describe how hard it has been to just get from sunrise through sunset every day.  Its a constant struggle between my mind, my emotions, my physical strength, and begging God to end my misery.

My reflection.

My reflection.

The reflection in the mirror deceives me with my gaunt face, sunken eyes, pale skin, and newly growing hair that doesn’t know which direction it wants to go.  I don’t recognize this girl and she scares me.  Cancer and treatment do some pretty horrible things to the body.  My skin is forever dry and I feel like I leave a blanket of snow every time I get up.  I have bruises all over my arms from having blood drawn every day.  I look like I just got initiated into a gang with all these bruises.

Food just doesn’t taste the same right now.  Things I used to love to eat make me feel nauseated now.  There’s not much of a selection for me to eat either that won’t cause said diarrhea or sudden onset of nausea.  It sounds like a prison menu.  No dairy, no fresh fruits or vegetables, no fried foods, no greasy foods, nothing spicy, no whole grains, and the list goes on.  I think prisoners might have it better than me now that i think about it.  There’s a constant bad taste in my mouth from all the medication and chemo effects.

The steroids have made me lose so much muscle mass, it’s so tiring to do simple things like brushing my teeth or getting my shoes on.  Even talking is a challenge.  Typing this is making my arms burn and I can barely keep my fingers from shaking enough to do it.  Everything leaves me out of breath.  Everything.

This is why I’ve been away so long.  Yes, I’ve screened my phone calls.  Yes, I’ve tucked myself away into my own little nook.  But I’m not sorry.  I need time and time alone to get better and to be alone with God while I try to figure out what it is He wants to show me through all of this suffering.  Yes, my life is an open book, but this book is gonna take a little longer to be written.  Like the great M.J. said in his song, I need to make a change for once in my life and I’m starting with the girl in the mirror.

Some change.

Some change.

I bought a guitar.

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Left and Right

What is going on?!  I feel like I’m being attacked left and right and I am.  Literally.  There is something dark at work here and it’s getting worse by the day.  It’s a physical, emotional, and spiritual on-going battle and I’m surrounded.  I’m cornered and I have nowhere to run.  Nothing to do but stand my ground where I am.  That’s all I have left:  my stand and my faith that someone bigger is still watching over me no matter what.

I’ll explain why I feel like this and you’ll understand.  As of last week, the latest news was that I’d need to undergo several rounds of radiation for the tumor in my chest and that doctors had located a blood clot in my left lung.  Remember, my left lung.  This is significant considering the news that I received just two days ago.  After the initial blood clot diagnosis, I was given an appointment to see another doctor on Tuesday, a cardiopulmonary specialist.  That’s right:  Dr. C.  Make him number 4 on my highly specialized team of experts.  I was expecting to see him about said blood clot but I was sorely mistaken.  He came in, sat down, and asked me if I knew why I was there.  I asked him, “Is it about the blood clot?”  He smiled and said, “Well, yes that’s part of it but there’s something else going on and I need to show you.”

Oh God.  My heart started beating so hard and fast I thought he could hear it.

Dr. C turned on the computer in the room and brought up two of my CT chest scans:  the one from April and the most recent one I’d had on August 13, last week.  He showed me April’s scan first to give me an idea of what ‘normal’ lungs look like.  I thought to myself, ‘Normal??  What’s wrong with them now??’

This is an x-ray of a set of normal lungs.  These are not my lungs but it’s the best representation I could find on Google.  The dark parts indicate air so those are the lungs and the lines at the bottom drawn in are the diaphragm.

Normal set of lungs

Now, a short medical lesson:  the diaphragm is the skeletal muscle that separates your chest from your intestines and contracts up and down to allow the lungs to take in and expel air.  Although not a very often thought of part of the body, it is a very important one.  If your diaphragm isn’t working, you ain’t breathing.  This brings me to the most important part of that conversation.

Dr. C then brought up the August scan and what I saw was frightening.  You don’t have to be a cardiopulmonary doctor to see the difference.  My right lung looked like this:

Paralyzed diaphragm

Again, this is not the actual x-ray of my chest but it might as well be.  Isn’t that gnarly?  “Why is my right lung way up there?!” I asked him.

Diagnosis:  diaphragmatic paralysis.  The tumor in my chest is squeezing the nerve that controls the right side of the diaphragm causing it to become paralyzed.  My right lung is no longer contracting as it needs to so it’s only working at 60% capacity.

Bells started going off in my head and a lot of questions were automatically being answered in there too.  The time after chemo when I was panting like a dog in my bedroom and all the times since then.  Being out of breath walking across the house.  Gasping for air at band practice when I tried to sing.  This whole time I’d blamed the chemo for making me tired, therefore, out of breath.  In reality, it was the tumor that had been causing all my problems.

Dr. C asked me if I’d been feeling out of breath and I told him everything.  He nodded in agreement of the symptoms I was naming off for him, one by one.  According to my symptoms and since my April scan was normal, it’s been since June more or less that my diaphragm became uncooperative.

So what does all this mean?  We don’t know yet.  Dr. C says that even if the radiation works to shrink the tumor, the nerve only has a 50/50 chance of returning to normal.  He said we’ll have to wait and see, but in the meantime I have to condition my lungs and body with moderate exercise to work with 60% capacity just in case it stays this way.  Although Dr. C says this is do-able, that I can live with 60%, it’s still gonna be a huge challenge.

The things I love to do the most right now are most in jeopardy.  I thought about dancing, my number two love.  I dance like nobody is watching when everyone is watching.  I sweat like a pig until I’m out of breath just to keep going.  A 60% working lung doesn’t lend itself to that.  How is my husband gonna spin me around on the dance floor without me looking like my eyeballs are gonna pop out from losing oxygen?  Not a pretty picture.

And my number one love?  Singing.  It hasn’t been impossible to sing, but it’s definitely been a challenge lately.  And that scares the living crap out of me.  I haven’t been able to dance in over a year because of my bum hip anyway and I can deal with that.  Not being able to sing?  I can’t deal with that.  It’s been the only thing that I can still do through all this; the only thing cancer has not taken from me.

Even though it’s being challenged, I am determined to not let this tumor take away the one thing I can still do well, the one thing I have left:  my voice.

You might think it’s dumb, but Rachel Berry from ‘Glee’ read the script right off of my heart when she said,

Before you close the door, I need you to hear me sing.  I have to.  There’s nothing I’m as good at or as passionate about or that brings me that much joy.

Through this whole journey I’ve repeated to my husband time and again, “As long as I still have my voice and I can sing, I don’t care if I can’t dance.”  Ironically, now that statement is being challenged.  The ability to still be able to sing despite my situation means everything to me.  It means I’m still me in spite of it all.  So help me God, I intend to keep it that way.

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.

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Listen to the little voice in your head. It knows more than you.

Intuition.  You know that little voice that tells you you shouldn’t do that?  Or the one that tells you something might be wrong?  Sometimes its just a weird inkling in the pit of your stomach, that ‘gut’ feeling.  I call it Godspeak.  Yeah, I had all of that literally SCREAMING at me as if in all caps for months but, did I listen?  Of course not.  I decided  (as many of us do) to remain completely oblivious or completely ignorant really as I look back on it now.

I didn’t know it at the time, but one of the main symptoms for non-Hodgkins lymphoma are night sweats; I’d been having them for months already.  By January 2011, it had been at least six months with at least 3 nights out of the week resulting in me having to change my clothes in the middle of the night because I was sweating so profusely.  I was about to celebrate my 30th birthday in February, so I attributed it to “getting old and my hormones going out of wack.”  No one thought it could be anything more sinister and least of all, me.  These things just don’t happen to me.  Or so I thought.

By the end of January, I started to experience some pain in my left hip.  It wasn’t very painful, just an annoying type of pain like when you pull a muscle trying to prove how flexible you are when you’re really not.  As usual, I made up an excuse and thought it was because of the 10+ Zumba Fitness classes I was leading every week.  “Just an overworked muscle.  It’ll work itself out.  Just gotta walk it off.  Take a couple of Advils.”  I thought of them ALL.  When I started to have to lift my leg with my hands to enter and exit the car, I went to see a chiropractor.  Why didn’t I go to the doctor and get an x-ray you ask?  Do YOU know why you don’t visit the doctor and take over-the-counter medicine instead?  Denial is human nature.  I thought I was unstoppable and no doctor was gonna tell me any different.  I could take care of myself.

Following my chiropractor’s orders, I stopped teaching for a few weeks.  That second week of January would be the last time I got to do what I love best in the world for God knows how long and I didn’t even know it.  By February, literally the week after my 30th birthday, the pain had yet to subside and only felt like it was getting worse.  The Monday after my 80s-tastic birthday weekend bash, I finally went to see my family doctor.  He immediately sent me for an x-ray and it came back, drum roll please……..completely NORMAL??  These guys are supposed to know more than us and it came back normal?!  I was sent on my merry way with instructions to refrain from exercising only to come back to him a week later.  “There’s no way there’s nothing wrong with my hip,” I told him.  The pain was only getting worse with each passing day and I hadn’t done a thing to aggravate it.  I was following my doctor’s orders.  The urgency of the little voice in my head was growing and becoming frantic.  The difference was I was finally listening but doctors weren’t.

 

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