Saturday, April 9, 2016

Of Angels, Demons and Heroes

cancer patient: Broken down young cancer woman sitting at home with friendYour world gets awfully small when you are in chemo treatment.   It includes your room (which is constantly invaded by nurses and DRs), and the hallway in the oncology wing (about 21 laps to the mile).    Your room has a bed, chair, couch (which at times was more comfortable than the bed), TV and a bathroom.    In truth, you don’t need too much more than that since you constantly being entertained by DRs and nurses taking vital signs, drawing blood, giving meds, examining, poking, and prodding.   In the course of my treatment I saw over 2 dozen DRs from 8 different specialties including infectious disease, wound management, cardiology, dermatology, Ear, Nose, and Throat, ophthalmology, oncology, gastroenterology.
Of course they never show up at the same time making sleeping in the afternoons almost impossible as literally every 15 minutes another DR or PA is showing up to examine you.  If I had a dollar for every time someone came in and put a stethoscope on me I could likely pay most of my medical bills.    The most interesting part is the lack of coordination across the specialties.  At times Pam and I were coordinating treatments across DRs, treatments that often conflicted with each other.  
Which brings me to the nurses and techs (nurses aids).  To call them angels is an understatement.    They were my daily care givers, my lifeline to the DRs, my counselor when I needed to know what a procedure entailed, my calendar keeper for tests and meds,  my advocate when I needed help,  and often late night conversationalist when I couldn’t sleep.   In addition to their medical duties they made sure we were fed, cleared our food trays, emptied and tracked bodily fluids, and tried their best to protect our sleep.  They held my hand through the bone marrow biopsy, entertained me by drawing a caricature of my best chemo look, encouraged me as I walked the floor, and checked in to get the latest on the birth of our newest grandchild (another boy).   Ring for a nurse and the majority of the time they were there faster than the best concierge.   Seldom in the course of the last 30+ days did I feel like I was anything but the most important patient on the floor.    
The demons are the daily challenges that you face that eat away at your confidence.   Sometimes its new challenges like determining what the volcano wounds on my back are (turns out to be Sweets Syndrome), needing Heparin shots (which are given in the stomach), dealing with spiking fevers (which in turn require tapping a new vein for more blood), getting cardio problems under control (more EKGs, Echocardiograms, and x-rays) and the biopsy the wounds as well as the bone.   Some things you know are going to happen but it’s still a blow when they do.   Like your feet swelling up from the fluids till they look like a uni-toe hoof.    Or the day when my shower looked like it was used by Chewbacca…didn’t need that hair anyway.   In most cases it’s not one big thing that gets you, it’s the constant barrage of body breakdowns and the resulting treatments and their side effects.  
Got to love MRIs.   Put somebody on a slab, tell them not to move for an hour put in ear plugs, headphones (with music), stick them in a small metal container that resembles a casket and then blast the sound of machine gun fire at them.  Occasionally ask them how they are doing but don’t listen to the answer.  And what’s the point of the music?  You can’t really hear it while the machine is pounding away, but if you happen to find yourself tapping your toe to a tune you are abruptly asked to stop moving.  Like going to a dance where the music is great and you can dance all you want as long as you do it in your head.
 
And then there is the food.   After a while everything smells and taste like hospital.  My daughter says it’s the chemo and she can smell it coming off me.   It makes ordering food interesting….I’ll have the white fish cooked in the chemo sauce and the bland brown rice with the hospital smell.    And what is it with cooking everything until it’s dried out, soggy or flavorless?   I guess if everything taste like nothing then you know exactly what you are getting.   It’s one area where there were no surprises.
The hospital smell also making wearing a mask pretty interesting since you end up recycling your own air.  Reminds me of being stuck in a cab in India without air and with a driver who clearly had been working a 24 hour shift in 100 degree weather.   Popping an Altoid (strong mint) before putting on the mask can help.
I apologize, I know I’m whining a bit.   I’m no hero, just a guy making it through this phase so I can move on to the next phase of treatment with the goal that somewhere down the road there will be a cure.  But there are heroes on the floor and I admire them greatly.  The family members who come day after day and sit by the bed of their loved one even when they are sound asleep.  Who sleep on the couch in the room overnight when a cancer patient is having a particularly hard night.  Who take on the burdens of outside life so the patient can focus on what they need to do to get better.  And then there are the cancer patients themselves.  The ones that have been at it for over 6 months, who are facing daunting odds to recover and who are in significant pain yet they fight on, day after day.  I’ve seen the determination on their faces, heard the cries of despair in the night, and seen them work to make it easier on their loved ones who come to visit.  They are the real heroes.
Angels, demons and heroes…it’s a strange combination but then again a cancer ward is a strange world.
Next time…finishing up Phase 1 and preparing for Phase 2.

9 comments:

Robert Bentley said...

Dave you can do this! We am so sorry you have experienced so much pain and daily/hourly challenges and nightmares. We want you to know we have all crawled into that bed of yours with you and are right there cheering for you every step of the way! Thank you for being so incredibly courageous in sharing this very personal struggle with all of us. You couldn't be more loved or more surrounded by the power and strength of love and prayers. Strength to you sweetie, you can and will get through this! All our love and hugs The Bentleys xxxxooo

Sanford Kravette said...

I am constantly amazed at how articulate you share this experience while going through so many treatments and discomforts! We are praying for you and hope with you that this phase passes soon. None of this is easy, but you and I are in this together...

Anonymous said...

Dave, I finish all your posts in tears. If anyone has a right to whine it's you and frankly you didn't sound like you were whining at all! Praying and thinking of you - stay strong!
<3
Cynthia

Anonymous said...

Don't ever apologize for for your feelings, you have a right to have them and it seems as though you are handling a terrible situation with dry humor. Keep up the fight and I am saying some special prayers for your complete recovery Dave.

Christine (Carlevale) McAllister

Michael Muhlfelder said...

Dave-
It's funny that you are the only one who could possibly think you are whining. Your strength, humor and view of the strange world you have been thrust into are both amazing and admirable.
You are and will continue to do great and the party when this over will be a good one!
-Mike

Anonymous said...

Thank you for sharing your stories Dave. You continue to inspire by being "self-led" versus "symptom-led" - I'm convinced it's your mental attitude of having trained for a "few" marathons! Continue to fight and be present each day. You'll adjust to those headwinds, rain and hills and I'm convinced your inner determination will be your source of strength. Keep the faith.

One foot in front of the other...even if it's 21 laps. :)

Todd

Todd Kozikowski said...

Thank you for sharing your stories Dave. You continue to inspire by being "self-led" versus "symptom-led" - I'm convinced it's your mental attitude of having trained for a "few" marathons! Continue to fight and be present each day. You'll adjust to those headwinds, rain and hills and I'm convinced your inner determination will be your source of strength. Keep the faith.

One foot in front of the other...even if it's 21 laps. :)

Todd

Aline Kaplan said...

Hey,Dave. Today's blog post on the Tortoise and the Hare is for you: http://bit.ly/1TTwrgA
Aline

Inez Uerz said...

Wow, Dave, for want of a better word, what a beautiful blog post. Absolutely harrowing what you have to go through. But how beautiful your ability to reflect and write about it; about the people around you and how they matter. In my previous life back in the Netherlands I worked in medical ethics and stories like yours, voices looks yours, were so necessary for patients to be heard and understood. That's why I can't help but say, what a beautiful blog boost. You make it so real.

Thank God you got through that first phase! And out of that lonely place! Thoughts, prayers and Boston strength for you! Inez