Monday, May 20, 2013

Side effects update

Friday, May 17, 2013: My stomach was crampy and hurt.  I was only able to eat one meal.

Saturday and Sunday, May 18-19: I felt like I had a GI bug.  Tired and diarrhea.  I called in sick to work both days and felt like I couldn't get enough sleep.

Monday, May 20: I felt better overall.   Vision has improved, but tummy still hurts when I eat.

My next dose of NKTR-102 is scheduled for June 3, 2013! 

Friday, May 17, 2013

Side effects

I woke up this morning and my vision was improving.  Things in the distance were getting clearer, but it was still difficult to read.

My niece, Coral, was singing in a choir concert at the Mall of America and I had planned to go.  I still wanted to go and Amy was driving so I had no excuse not to.  We headed to Bloomington with our mom and Olivia miles behind the buses carrying the singers.

Olivia sat in her carseat in the back next to her grandma.  She sipped on the soymilk in her sippy cup and put it back in her cup holder.  She nibbled on crackers that I brought and on the Fruit by the Foot that Amy brought.  Olivia teased my mom by unbuckling the top buckle on her carseat strap, slipping her arms out and waving them freely through the air.  She can't unbuckle the one that buckles between her legs, so she said, "I'm stuck." 

My mom told her, "You are supposed to be stuck.  Get your arms stuck again." 

Olivia got her arms stuck.  She noticed a little cow and cat flashlight that Amy has in her van and Amy passed them back to her.  When she pushed the button the cow Moooed and the cat Meeeooowed and a little light lit up their noses.  Olivia laughed, then noticed a pink flower ring that had been buried in the frosting on top of the cupcake I had brought Amy to work on her birthday last summer. 

Olivia pointed and said, "Ring." 

I told her, "No, that is Amy's.  It is her special.  She is sharing the cow and cat with you.  The ring is Amy's"

"Noitsnot." Olivia continued to point. She repeated, "Noitsnot.  Its mine!"  That got my mom laughing.  Olivia eventually got the ring.  It didn't fit well, but she shoved it into a hidey hole in her car seat for later. 

Olivia in various stages of stuck.

My mom and sisters tell me I am their navigator and claim I have a GPS in my head. 

My mom told Mark, "I hate the Mall of America.  Last time Amy and I went there together we got lost in there." 

Mark asked her, "How can you get lost in the Mall of America?  The thing is a circle."

"No comment."  She said while he laughed. 

We found the choir getting ready to stand on risers and sing.  There were about 10 small benches set up, but we stood on the side watching and taking pictures.  Olivia escaped from her stroller.  Toddlers have power in this situation and they know it.  She glanced at us and started wandering between the benches until she found one she liked, then she climbed up next to a gentleman in a flannel shirt with tattoos on his arms.  He glanced over at her and smiled, then watched the stage.  She sat for the first song, then clapped, then slid off the bench to wander back to us.  After that base was touched, she went back and sat next to the man for the next song, repeating this for each song until the fanalie.  For the last song, some of the choir left the risers and stood on the floor.  They danced to this song and Olivia danced with them, trying to match their movements.  It was very sweet.

Coral singing and dancing with her choir.
Olivia dancing with the choir.

Facinated by music and dance!


 Olivia running Wild

Olivia sitting quietly by a new friend (man in the plaid shirt).

Olivia did not get her nap and when we stopped at Red Robin for veggieburgers and onion rings, she was a wild girl.  She slid off the bench and got loose under the table and ran over to a booth where there was a merry-go-round horse displayed.  She wanted to ride it.  We chased her around.  Distracted her with the iPad and then food, but a toddler can only take so much sitting in one place. 

We headed home.  Natalie had an appointment for a follow-up CT of her foot to look at the stress fracture in her heel, then she had soccer practice. 

Later this evening, I start having diarrhea.  I looked through my instructions.  I took 2 Immodium and called my mom.

"Mom,"  I said, "I have to talk to you as an oncology nurse right now."

"Ok," she said, "What's up?"

"Well, I have diarrhea and I took 2 Immodium from my home supply and I feel ok and everything, so do you really think I need to call the on-call nurse?"

"Sarah."  My Oncology Nurse mom said, "If you wanted  'No, you don't have to call. You're fine. Just wait.  It will go away by itself.'  then, Sarah, you meant to call your dad and you dialed the wrong number, but you asked to talk to the oncology nurse in me, so here is my advice: Get that bottle of Immodium the nurse gave you and open it.  Break the seal and take out 2 pills.  Put these pills in your home supply and only use the pills in the bottle from now on.  Find the number and call now.  You are on a Clinical Trial and you have to follow all the instructions they gave you.  Do it now."

"Ok.  I will.... Hey, mom, how would you like that job?  Answering the 'shit pager?'" 

She laughed, "I wonder what the ring tone sounds like?'  I could hear her opening a drawer.  "Probably like this-" 

She pushed the button on her fart machine key chain.  We laughed.  "Hey, maybe these should be standard equipment for nurses and patients.  You could just call, say "Sarah here" and push the button that most closely matches your symptoms.  She went through all six fart variations: Classic Fart, Up Tight Fart, Nervous Fart, Ripper Fart, Juicy Fart and Power Fart.  I have heard these before.  More than once.  Still hilarious.  (My mom told me the video above was her 6th attempt.  She just couldn't do it without laughing.  That's a family trait, by the way- dominant gene.)

"Sarah, remind me to give this thing to you.  It's yours now.  I am passing the fart machine to you.  Maybe we should have a ceremony or something.  We could wear tiaras!"

I laughed, "You can't part with it."

She said, "It has been sitting in my drawer.  I used to carry it in my purse, but then stuff in there kept pushing the buttons as I walked and the thing kept going off."

"Yeah, sure it did." 

"It did!  I had to take it out and now I forget I have it....  Hey, sorry to make fun of your diarrhea.  It was those onion rings.  We are not used to eating a lot of fried food.  Give me and Amy a few hours, we'll catch up to you .   I love you.  Hope you feel better.  Sarah, you call the shit pager right now!"  Then she pressed the button to the loudest and longest fart....  At least, I think she hit the button.  :)

Where is Amy's cow keychain?  Here it is!  

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

Thursday, May 9, 2013

Touching Base

So, I haven't been the best blogger.  I have been busy living.  Pretend this is a map and there is an arrow pointing at this spot, next to the words "You Are Here."

At the end of April, I finished my 12th round of Abraxane.   Each round consisted of a 30 minute infusion given once a week for 3 weeks, then one week off.  I scheduled my chemo for Monday's at 4pm, so my Chemo Buddy (my mom) and I could watch Ellen while the chemo infused.  After an IV was started and labs drawn and blood counts checked, we waited for the chemo to be mixed and checked and infused.  It is important to laugh during chemo, to create a positive synergy.

Back in December, I had a small spot on my spine at L4.  We were hopeful that this chemo would kill these cancer cells.  On April 24th, I boarded a plan with my mother and Stick Amy (Amy was supposed to go with us, but made another committment in the meantime.  She went along in spirit.  And on a stick.)  We were headed to California to visit my younger sister, Ashley, who works as an Animal Cargiver at an Animal Sanctuary.

Some picture highlights of our trip:

California 2013

That week in Califorinia flew by with a trip to the ocean, an adventure looking for the locations used in the movie, "The Birds" and eating at some of Ashley's favorite vegan restaurants. The sanctuary had recently rescued 900 chickens, 4 roosters and 3 goats. My sister has 5 cats.  For seven days, we got to watch these animals come to life as they learned who they are.  For seven days, we sat in the sunshine, watching them, listening to their sweet sounds and feeling the peace of the foothills.   
 We returned on May 1st.  On May 2nd, I had a PET scan and CT.  Around noon that day, Dr. Laudi called to see if I was in any pain.  I told him "No."   He was reading the results of the scans and they showed that L4 was still active and larger than the previous scan in December.  He ordered an MRI to determine if the tumor was pushing into the spinal cord. It is not. 
Monday, we had an appt to discuss our plan.  My options were:
-Radiation or no Radiation.  Once a bone goes through a series of treatments- it cannot be irradiated again.  If I was in a lot of pain, then we would do it, but I am not, so Dr. Laudi thinks we should save that in case we need it later. 
-Chemo.  He recommended a chemo, that he thinks I will tolerate, given my history. 
-Clinical Trial.  There is a clinical trial that originated in Japan that looks promising.  If I agree to it, my name would go into a computer and randomly decide if I would be in: Arm A (getting "NKTR-102" , the phase 3 experimental drug) or Arm B (the chemo Dr. Laudi already suggested).
Plan: No radiation for now. Consent to the clinical trial and Mark has been reading and really hopes I get in the Arm A group.  Clinical trials require lab work and tests before a person starts.  I had 6 tubes of blood drawn and peed in a cup.  We will meet with the Research Nurse once the preparations and randomization process is complete. 
Please pray for wisdom during this process.  (Mark wants prayers for Arm A)