Thursday, May 16, 2013

Randomization: Chemo #1 (NKTR-102)

Clinic trail.... Here we come!  In the randomization process, I was selected for Arm A: to receive the experimental drug, NKTR-102.  I feel positive about this, but somewhere in the back of my head Mark's voice echoes "It isn't the cancer that kills a person, it's the side effects or reactions to those drugs." 

I know it sounds petty and stupid maybe, but I feel a loss for my old chemo schedule- Monday at 4pm with Ellen Degeneres and my mom and nurses I know.  I will get this drug about every 21 days (with a little wiggle room of a couple days on either side for scheduling).  It will be given in the clinic infusion center, which I am resistant to.  During the day, which I am resistant to.  By people I don't know, resistance.  More drugs, more resistance. Yes, resistance is the theme.  Trust me, I am grateful I have not exhausted all my options.  I understand every 21 days is significantly less than every week for 3 weeks and off for one.  I know Ellen is on at 4pm regardless of where I happen to be.  I know where to find my mom and can make plans to hang out with her most any time...

It's just that... cancer does not get to own me.  Call mine a tantrum befitting a 2 year old if you will, but do not dismiss my declaration of independence, my assertion of free will, my laying claim to what's MINE in a world filled with shiny, interesting things we are told we can look at, but never, ever touch.   My Olivia is two.  I share this process with her and, for both of us, it is part of our becoming.  Cancer has always been my teacher and I, a willing student, but the best of teaching moves in both directions.  What will cancer learn from me? 

Today, on May 15, 2013, a Wednesday,  I received my first dose of NKTR-102.  First, I had to meet with Dr. Laudi and Dawn, the research nurse.  They explained the plan and how they would monitor me.  I had more labs drawn.  Then Mark, Olivia, my mom and I were led to a small private room.  The nurse started a peripheral IV, then we waited for the chemo to be mixed.  My nurse put gloves on Olivia, so she could "help."  When Olivia saw the needle she said, "Owie." 

 Olivia loves the clinic.  It's one of her favorite places.  She doesn't know that many of the people here feel like she is their baby, too.  Even though it is their job, we become bonded and invested in each other when we experience life together.  I don't just drive up and stick my arm through a hole in the wall.  They touch me.  I touch them.  They gave me chemo while I was pregnant with Olivia and they helped get us to this day safe and sound.  I can see it in their eyes when they hold her.... It is a brave thing- to plant hope and nurture a dream.  It is a precious thing to watch it grow and actually get to hold it in your arms.  Olivia has no idea who she is to these people or who they are to her.  Olivia just knows they have candy dish, multiple candy dishes set here and there, filled to the top just waiting for her to take some and eat it and fill her pockets for later.  Today, her small hand was filled with candy and she leaned and twisted and searched her dress for a pocket.  She had no pockets, so she climbed on her grandma's lap and stuffed them into this small (more decorative, than functional) pocket on my mom's tshirt giving her a smooth boob and a bumpy boob.  Very sweet and got us laughing.  (I have to laugh- my mom and I put it on my MAR).

Chemo arrived.  It is a 90 minute infusion with a little more time to flush the tubing. About 2 hours total.  Apparently, a concerning side effect of NKTR-102 is diarrhea. I was given a bottle of Immodium with instructions to take two for the first diarrhea stool and to take one more each diarrhea stool after until it was controlled. Diarrhea can mess with a body's electrolytes and become a very serious problem very quickly, so the goal is to keep on top of it.  I was instructed to call the clinic or the on-call nurse pager to report side effects.  Dawn told me to bring the bottle with me to each visit.  She would count the pills and refill the bottle.  My nurse took my vital signs and told me to report any reactions I felt.  The room did not have a call light.  She gave me a metal cow bell to ring for assistance.  We put that out of Olivia's reach right away, even though she said, "That's mine."   Olivia goofed around and danced and played games on the iPad we brought along.  Then, Olivia "assisted" with removing my PIV and we headed home.  After lunch, Olivia, Amore and I took a nap and Mark had to go to work.

When I woke up an hour later,  there were two Olivia's, one superimposed but slightly to the right of the other.  I tried blinking and rubbing my eyes.  I noticed everything had a little ghost self next to it.  I put on my glasses.  I tried to read, but couldn't make out the words. I gave it a little time, but it didn't improve, so I called Mark and he called  Dr Laudi and my mom (not in that order).  Dr. Laudi was concerned that I was having a stroke or an aneurysm.  He called Mercy Hospital to prep for my arrival.  He called Mark back to say the closest ambulance was 18min out and he told Mark drive me to the ER now.

At the hospital,  my golden ticket was at the desk.   No paper work to fill out for me.  No long wait.  A nurse took a set of vitals and put a name band on my wrist.  Could have said any name- I couldn't read it.

The ER Doctor came in quickly and did a Stroke test and ordered a Brain MRI.

They compared my previous brain MRI done in February to this one.  There was no change.  I was sent home with orders to call with any other changes or if I had not improved by morning.  The research nurse would be calling me for an update. Mark scanned the internet on his phone looking at documented side effects of NKTR-102.  Double vision was near the bottom of the list.  A rare side effect with only 3% of people getting the drug reporting it.

Nothing to do, but wait...

Warming up my arm for my peripheral IV.  I am in Room 3a, as you can see.

3b was occupied by a quiet little dog with a smartphone.

Candy makes Olivia feel like break-dancing!

Olivia keeping both eyes on her loot.

NKTR-102 infusing.  It really is as fun as it looks!
The pocket that held the candy... very briefly and not shared.

 Olivia, (future) RN

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