Monday, November 5, 2012

Testing, three, four ... Is this thing on?

 By the time the next phase of diagnostic testing begins, life starts getting very serious, very fast.

And when I say serious - I mean surreal.
Where were you when I needed you, Ashton?
I remember sitting huddled in cold waiting rooms draped in a one-size-fits-none gown telling myself this would be the scan/exam/lab test that proved there has been some terrible mistake.

 This couldn't possibly be my life.

With every scan I half expected Ashton Kutcher and his crew to burst out from around an MRI machine, pointing and laughing.  "You thought you had cancer! You should have seen your face"!

But, no such luck. Instead, each test only reconfirmed the last.  I did have cancer.  This was my life.

Still in shock, I then had to make one life altering decision after another.  Who would be my surgeon?  Reconstruction now or later?  Which oncologist would be right for me?  In short, I was asked to assemble what I came to refer to as "The Dream Team" - the group of medical professionals who would listen to me, care for me and ultimately save my life.

How I remember my nurse.  I may have had some dilaudid on board.
This is no easy task - and I cannot advise the best tactics to make such decisions. Personally, I made my choices after speaking with nurses who worked closest with the physicians at the hospital. I may be biased, but I've found nurses to be pretty reliable in knowing what "really" happens in the medical world.  At any rate, I could not be happier with who I eventually assembled.  And knowing the quality of care I received from them actually renewed my faith in the medical system as a whole.   

I've found that receiving the best medical care does not always mean a perfect outcome. There are still no magic wands out there.  But the best professionals will keep you front and center as part of the team.  They will take the time to explain difficult situations and empower you to make informed decisions about care.  Those first couple of months after my diagnosis were the most trying days of my life and I will be forever grateful for the compassion and excellent clinical judgement that was provided to me by not only The Dream Team but also the entire hospital staff.

Everyone should feel that sense of confidence about their team - and if you don't, I would encourage you to find a new team.  

Diagnostics

By this point, you will be a pro at receiving scans.  Trivial things such as scan ambiance - or lack thereof - may begin to annoy you.  You may silently critique staff for doing things like offering blankets in a timely fashion or how well gowns fit.  As for me, I became fixated on the terrible music that always seemed to be playing while I was stuck in confined places. Seriously - they have canned music in malls with subliminal messages like "don't shoplift" or "stay longer".  Why can't there be a soundtrack for diagnostic scans with subliminal messages like "Don't give up or you'll never know what happens in The Walking Dead" or something equally as meaningful?

Brain MRI -
My particular tumor type likes to hide in the brain and this scan was ordered to search for anything suspicious, as well as to have a baseline scan for the future.  I can think of nothing more terrifying than the prospect of not being able to trust ones own thoughts.  I feel as though I could deal with most other scenarios - but I needed to be able to take solace within my own brain and was petrified by the prospect of finding cancer lurking there.  I was very thankful when the results came back negative.  Thank goodness for "empty heads!"

The Music
The MRI crew supplied me with headphones which piped music from a CD player set to some sort of generic ghetto music whose lyrics - and I'm not kidding - were something along the lines of "I can't believe you moved on so quickly after I was gone."  Nice.  The first chance I got, I asked the technician to change the music.  Which she did - to Norah Jones.

They're coming, Norah!
Now, I happen to like Norah Jones (unlike my husband who refers to her as Snorah), but this was NOT a good choice for an MRI.  Instead, the dichotomy between her lilting tones and the machine's metallic clang was something akin to Norah Jones being attacked by Space Invaders. *Sail awaaay with me, in the night... (BOOM BOOM BAM BOOM) Sail away with me... (CRACK CRACK CRACK BOOMBA BOOM WHIR)*  - Run Norah - they're right behind you!

Playlist suggestions:  Anything with a club style "remix", Beastie Boys, Black Eyed Peas - you get the idea.

Echo/EKG -
This was another "baseline" exam.  Chemotherapy can be hard on the heart (in more ways than one) and regular monitoring of cardiac status is required to ensure no damage is being done.  The exam is painless and usually takes less than 20 minutes to perform.

The Music
Nada.  The test was completely quiet to allow the technician the ability to listen to the machine.  However, I feel the experience could have been improved had I brought along an ipod.  And being that I have an echo scheduled every three months until possibly the end of time to monitor my little ticker - I'm making a mental note to bring one along next time.

Playlist suggestions: Happy and mellow - think Head and the Heart, Mumford and Sons, maybe a little Paul Simon.

PET scan - 
Probably due to a childhood steeped heavily in Star Trek reruns, I pictured this scan to be something hand held that would beep when cancer was detected.  Sadly it was nothing so magical.  PET scans detect glucose metabolism which is elevated in rapidly dividing cancer cells.  After spending 24 hours without *gasp* eating carbs, radioactive glucose is injected into a vein and after 30 minutes of sitting quietly in a dimly lit room, a CT is performed.  Areas such as the brain and bladder glow brightly on the scan and that is a normal finding - anything else can be suspicious for cancer metastasis.  The exam is painless but it can be eerie to lie back and scan your body for lurking danger.  Just like any of these scans - the hardest part about going through them is the great unknown.

What I pictured a PET scan would be like. (Spoiler alert: It's not)
The Music
The technicians here had a radio station playing during the scan.  This would be fine except when I was in the middle of the scan - guess what came on?  Knock, Knock, Knocking on Heaven's Door. Cue the "Punk'd" themesong.

Playlist suggestions: Everyone has a "happy place" song or two. For me it's always been The Rolling Stones You Can't Always Get What You Want. Choose the song that makes you feel as though you can get through whatever life throws at you - put it on your playlist and hit repeat.  Because you can - don't forget that.  As terrifying as it is to go through these tests, life gets easier when you can finally start fighting back. 

You can't always get what you want.
But if you try sometimes, well you might find
You get what you need. 


Truer words have not been spoken.