Monthly Archives: September 2012

Now THAT’S a paradigm shift.

Remember how I said in a previous blog entry that ‘I heart M.D. Anderson’?  Well, I’m saying it again, this time with resounding emphasis and fervor:  I heart M.D. Anderson!  Why?  There are various reasons but this past weekend really swept me off my feet.  I am now officially head over heels in love with this place.  This is serious, people.  We’re talking true love here.  What epic event caused this sudden influx of ‘that lovin’ feeling’?  The M.D. Anderson Cancer Survivorship Conference.

This two-day weekend event was exactly what the doctor ordered.  It was food for my mind, my body, my soul, and my spirit.  This conference was a major turning point in the way I view this whole situation.  It caused a much-needed paradigm shift in my brain, an a-ha moment if you will.  Oprah would be proud.  I’d seen the pamphlets and posters around M.D. Anderson announcing this event for the past few weeks and it seemed interesting but I wasn’t sure it was something I should go to considering the word ‘survivorship’.  Why is that, you ask?  Because up until this weekend, I didn’t consider myself a survivor.

The American Cancer Society defines a person as a cancer survivor “from the time of diagnosis throughout the balance of his or her life.”  I always had a problem with that definition.  It’s the reason why I didn’t consider myself a cancer survivor.  I’d been told time and again that at the very moment I was given my diagnosis, I was a survivor.  I guess it’s really the last part of that definition that was my problem.  That pesky “balance of his or her life” part.  There’s always that fear of ‘what if’ in the back of my mind throughout this battle.  Yeah, I’ll just say it.  What if I don’t make it?  What if I never get to hear the word ‘remission’?  It doesn’t mean I believe those questions but, nevertheless, they’re always looming.  Always present.  If I don’t make it, am I not a survivor?  The people that have lost their lives to cancer, are they not survivors?  The word ‘remission’, to me, was synonymous with ‘cancer survivor.’

You can see my problem with this definition and why I was having trouble applying it to myself.  How was I to consider myself a survivor if I wasn’t in remission?  I thought attending this “survivorship” conference would be rather weird considering I wasn’t a survivor.  I got the push I needed to go when a good friend in the media department sent me an email suggesting that I attend along with all the information I needed to sign up.  Talk about a push in the right direction.

I rearranged all my medical appointments for that Friday and signed myself up along with my husband.  We arrived bright and early the first day of the conference and walked up to the registration table to get our name cards and swag bag.  “How long have you been a survivor?” the volunteer asked.  This question perplexed me because I wasn’t in remission and I felt like an impostor.  ‘Great, now they’re gonna know I don’t belong here.’  I must have looked very confused because then she asked me when I was diagnosed and proceeded to hand me a yellow lanyard for my name card.  Apparently, yellow was for first year survivors.  ‘Ok, if you say so,’ I thought to myself.

The first session I’d signed us up for was not what I signed up for.  It was called ‘Yesterday, today and tomorrow: Strategies for long-term survivorship.’  I thought I’d signed up for diet and relaxation tips.  I was absolutely wrong yet pleasantly surprised.  There had been other sessions to choose from in the same time slot but I had chosen this one.  This session was meant for me and it was meant to be the first one we attended.  The speaker came to the podium and the first question (I kid you not) was, “When did you first consider yourself a survivor?”  She wanted to see a show of hands and declared that she wanted us to share our experiences in reference to that question.  I thought, ‘Great again, dummy.  You signed up for the wrong session.’

Wrong again.  As people began to share their experiences, I found myself nodding in agreement.  I could relate to these people.  The speaker then brought up the definition of a cancer survivor.  Survivorship did not mean ‘remission’ and it did not diminish the battle of those that had passed on because of cancer.  She said that the battle, the daily struggles against cancer, made us all survivors.  Death is not a loss to cancer and it did not belittle the battle so bravely fought.  It was at that moment that the light bulb turned on in my head.  My a-ha moment had arrived.  I began to cry as a lady talked about when she had realized just that because it was like she was inside my head, saying the very thing I was feeling in that moment.  Over and over, people stated that they hadn’t felt like survivors until they realized that concept and I instantly felt complete knowing that I wasn’t alone.  I wasn’t broken after all.  I was only human.

My love for M.D. Anderson grew that day with their definition of a cancer survivor.  Even if I never hear the word ‘remission’ or even if cancer takes my life, I will always be a survivor.  I will never forget all of the survivors that I had the privilege of meeting that fateful weekend, my new friends for life.  The girl who’s fought brain cancer for 9 years straight and who continues to fight.  The guy my age who’s ‘watching and waiting’ his prostate cancer.  The twenty-something woman who beat brain cancer at the age of 9.  The young woman who had her leg amputated due to bone cancer at the age of 13 and is now a nurse on the same floor at MDA.  The talented violinist at our banquet dinner who was told she would not survive seven years ago.  They are beating the odds and so am I, regardless of the outcome.

The rest of the conference served as therapy for my husband and I from that point on.  Compliments on my ‘do’ or newly resurfacing hair were abundant and very much welcomed.  Our many new friends including a few that work at M.D. Anderson as volunteers and a whole group of young survivors just like me.  My joy as my husband told me how he felt a huge weight off his shoulders just by meeting other husbands who have walked in his shoes.  Our excitement as we got to meet and snag a photo with Dr. Ronald DePinho, the president of the cancer treatment center second-to-none other in the world.  In the words of Ron Burgundy:  that makes him kind of a big deal.  And the best part?  I know with absolute certainty that, no matter what, I AM A SURVIVOR.

I HEART M.D. ANDERSON.  Sigh…l’amour.

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My Love/Hate Relationship with Radiation

A haiku about radiation therapy:

Rock in my shoe

My Obi-Wan Kenobi

Radiation

Ok, so I’m not a poet but that’s pretty much how I feel about radiation right now.  It’s a strange thing, this radiation.  Today marked the 12th round out of 23 total rounds and I don’t know whether to love it or hate it.  I’m not gonna lie.  We had a rocky start, radiation and I.  Our relationship is not great but it looks like we had a breakthrough today.  Things are looking up for us.

My first encounter with radiation was definitely NOT love at first sight.  First impressions are everything and the first impression I got was a resounding (and I am not exaggerating):  HELL TO THE NO!  I literally came out of that first session in sobbing tears with my poor dad beside me in the car looking at me like he was a deer caught in headlights.  My first appointment was only supposed to last about an hour with subsequent sessions to be half an hour long.  I was fine until that first hour turned into two and then I was anything BUT fine.

Let me make this clear before I explain what happened:  I am not claustrophobic in the least.  In fact, I kind of like enclosed spaces.  They make me feel safe like a baby rolled up in a burrito blanket.  But that first day, I got a taste of what claustrophobia feels like for the rest of the world.

Each treatment usually goes the same way every time.  I have a special mask that was made to fit my face and head exactly for each treatment.  This mask is made of plastic and has a honeycomb design that allows for me to breath, blink, and not much else.  I lay down and they begin to mark my body with tape and stickers with little metal BB’s in them so they can aim the radiation machine just right.  They put the mask on my face and snap it into place onto the table.  I can’t move my head at all and can barely open my mouth to take a deep breath and hold it when they tell me to.  The therapists tell me not to move and then leave the room because radiation is dangerous.  Ha!

BB sticker/marker

The dreaded mask.

The radiation machine moves all around me and a therapist’s voice comes on the intercom and tells me to hold my breath.  I hold my breath until I feel like I’m going to pass out only to be told to do this over and over about ten times.  The machine makes a beeeeeeeeping sound while I hold my breath to indicate that radiation is being emitted.  I can’t feel it and it doesn’t hurt but knowing that it’s there is eerie.  I think to myself every time as I hold my breath for ten years, ‘Don’t you dare move.  You don’t want that crap going anywhere but through that tumor.  Hold your breath, come on, just a little longer.  You can do iiiiiiit…”  Yeah, until I can’t anymore and I gasp for air so the machine has to stop.  If my first session had gone this way, I would have counted myself lucky.  But it didn’t.

The Machine.

It was my first session so everything took a little longer of course.  What nobody was counting on that day was for the camera that lines me up to stop working.  By that time, the therapists had done a ton of prep work with my head strapped down on the table for the past hour.  They couldn’t let me off the table until they fixed it or else I’d have to do it all over again and it would further push back my treatment.  And so, I had to endure.  During the next hour, my mind started racing and I started to spiral into the black hole my thoughts were pulling me into.  Therapists kept coming in and apologizing and trying to reassure me that they would be done soon but it made no difference to me.

The skin on my face hurt from the plastic mask pushing up against it.  The back of my head was throbbing from being pulled so hard and for so long into the hard table.  I began to repeat Psalms 23 over and over in my mind and praying to God to keep me calm and collected.  It worked at first for about twenty minutes.  Then it began.  I started to feel the panic creeping in and tried to keep it at bay but to no avail.  I wanted to move so bad but I couldn’t let myself for fear of having to do it all over again.  I was incapacitated and panic became my master.

I began to sweat when I had the absurd thought that I’d been forgotten and that nobody would ever come back to set me free from my mask prison.  As my eyes began getting misty, I told myself to stop being a big baby.  The tears inevitably started streaming down my face and rolled to the back of my head making it even more uncomfortable.  The therapists knew I’d started crying because the machine noted my irregular breathing.  They kept trying to reassure me over the intercom and I tried to stop crying but it was like a flood gate had been opened.  Once open, they’re impossible to shut.

After what seemed like an eternity, they were finally able to give me my first radiation treatment and let me off the table.  They took the mask off first, of course, and helped me sit up.  They wiped the sweat and tears off my bald head as I rubbed the back of my throbbing head and promised me it would never again take this long.  I was doubtful about that in that moment and I just wanted to run away screaming in the opposite direction.

I’d stopped crying when I re-joined my father in the waiting room but he could tell anyway that I’d had it rough.  I thought I was ok until we got into my car and I looked in the mirror.  My face had the odd honeycomb design from the mask etched into it and I began to sob.  I was looking at the face of someone who had just totally lost it and panicked.  I felt sorry for myself and proceeded to give in to my pity party of one.  I don’t feel ashamed to say that I cried for a good 20 minutes straight.  I’m an imperfect human and it was impossible not to.  Now I know exactly what claustrophobia feels like.  This was one of those experiences that you don’t ever wanna go through again, you want to completely forget it, and you don’t wish on anybody else no matter what.

That was my first impression of radiation.  Not good at all.  Since that first time, I’ve had 11 more rounds and the therapists proved themselves:  it has never again taken that long.  It’s actually been rather pleasant other than the honeycomb etching on my face afterward.  My therapists are all so friendly and I’ve come to enjoy being able to see them on a daily basis.  One of them even reminds me of Mr. Chow from ‘The Hangover’ and I can’t help but laugh to myself when he talks to me.  Good thing he’s funny.

And so, my relationship with radiation, although not perfect, has begun to improve.  I was told by Dr. R today that I will probably start experiencing the effects of radiation by next week.  I’m stand-offish toward radiation about that but at least we are starting to get along especially since Dr. R gave me the BEST news today that I’ve gotten since I can’t remember when:  the tumor is SHRINKING!!!  Yes, shrinking!!

Jump for joy, scream and shout, clap my hands, and thank you Jesus!

Oh, radiation!  The rock in my shoe yet my Obi Wan-Kenobi.  I hate that you are my only hope but you are WORKING!  Now I must end this blog so that I can go dance a jig.  A haiku and a jig all in one day for radiation.

Things are definitely looking up.

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