Tuesday, November 6, 2012

What Survivor Looks Like

If there is one thing I've learned through chemotherapy, it's this:  Don't plan on anything during chemotherapy. The moment you start to think you are in control of the situation - all heck will break out.  Which is why, when my friend Kym invited me to walk with her in Coeur d' Alene's Race for the Cure on September 23rd  I had no idea if I would be able to follow through. But, as luck would have it, on race day I was just beginning to venture off the couch again after recovering from yet another chemo dose.  And though I was weak at the time, I've also learned not to let "gift" days pass us by. 

And the race - my first wearing a snazzy "survivor" tee-shirt - was certainly a "gift" day.  Surrounded by friends, family and a sea of community members all donning pink - it was inspiring to feel the support of others who have been affected by the disease.  And though the services offered by Susan G. Komen foundation (such as screening mammograms for those over 40) do not benefit me personally - it is certainly a good cause.  They do an amazing job of raising awareness about breast cancer and I love that so many communities are taking up their cause.

I was not prepared for the sheer mass of "pink" at the starting line!  Check out the guy in the sombrero!

Starting out.  It looks dreary in the pictures, but it was a perfect day for a walk.

A little weak yet - but I think I should get points for participation.

Teague, Maddie and Kendel hamming it up.  Teague just could not bear to wear pink.

Beck, Brock and I setting the pace - well sort of.

This made my heart hurt a little.  I hate that he has to be so young and know what this means.  At the same time, I am so proud of our family for the strength, support and love that we show every day.  We are stronger for having gone through this.

So many of us have been touched by the disease - whether through a mother, sister, grandma, aunt or friend.

The kids had a great time, walked the entire 5K and didn't whine once.

This is one of my favorite pictures.  I think it captures the spirit of the day.

Coeur d' Alene is wonderful place to live.  The race was a good reminder of how supportive our community is.
I made it the whole 5K too - and didn't barf on anyone's lawn.  No small feat considering the week I'd had.
The crew (minus Becky the photographer).  I have to admit the word "survivor" still feels a little foreign - maybe even premature.  I think while I'm still in the middle of it "warrior" may be more fitting.  But I look forward to the day when "survivor" fits like a glove.  I'll have earned it.  This isn't easy - this business of being a survivor.  But it's do-able thanks to the love and support of those that stand beside me every day.

Monday, November 5, 2012

Underrated Bodily Fluids

This year Halloween came a little late to the Caro household - specifically me.  With my last two chemo treatments both scheduled throughout the month and my body rapidly losing strength, October was less than kind.  In fact, it was downright brutal. And last week during my post chemo labs it was clear I was going to need a little boost to get through this last round of treatment.  After attempting to rehydrate me with two liters of saline and some steroids, the decision was made to order two units of blood. 


 Even though I've given blood products to countless patients and never thought twice, something about needing a transfusion myself seemed a. extreme and b. ooky.  But the simple truth was I was losing ground.  I was lethargic to the point of not being able to drink a cup of soup without needing to sleep for hours and I was short of breathe just walking up the few stairs to our bedroom.  My heart rate raced above 120 with simple activity.  It had to be done.
Hey Baby - What's your type?  (A Positive)
The effects weren't immediate - but within 24 hours I could feel my energy returning and I wasn't struggling to breathe any longer. Over the weekend I had the energy to play with my kids, get caught up with laundry, read a book and even write a little - oh and did I mention I can breathe again?  It's kind of a big deal. 

(My blood levels were low because chemotherapy kills rapidly dividing cells - of which blood is one.  However, red blood cells take about three months to regenerate so we were killing them off faster than they could bounce back.  They would eventually come back on their own, but I was too symptomatic to sit back and wait for that to happen.  Not everyone who receives chemotherapy needs blood.  But in my case it was definitely needed.)

I wasn't a trauma victim.  This blood didn't save my life.  But it did speed my recovery through this.  Made my life easier and allowed me to breathe easier in every sense of the word.  And for that I am ever so very grateful. So thank you, thank you to all of you out there who donate blood.  Please know that it makes a difference.  Sometimes in ways you could have never expected.

And if it's been a while since you last donated - get out here and do it.  Tell them I sent you (and ask for an extra cookie - you deserve it!)

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.  


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.