How can I help?

We are so blessed for the outpouring of love you have already given us.  We are grateful to be in your hearts.  Still, people keep asking "How can we help?" or "What can we do?" 

Mark and I are both working.   Mark is the owner of Phoenix Taxi and I work part-time in the Materials Managment Department at Children's Hospitals and Clinics of Minnesota. I work to keep the health insurance for our family.  We just keep going, keep living, but when pressed, here are some things that we appreciate...

 

•  Target Gift Cards.  We do most of our grocery shopping at Target and fill all our prescriptions there.  Email me for my address.
• We are registered at Amazon.com https://www.amazon.com/registry/wishlist/28BY681FXAQ3K/ref=cm_reg_rd-upd?_encoding=UTF8&msgid=updated
• Monetary donations to help cover our out of pocket medical bills. This year, our costs for my cancer treatment and meds will be over $6000.  Any little bit helps.
• Your positive thoughts and energy. 
• Your prayers.
• Your love and support.

Thank you for everything.  You light our way...

Up North

Today, we put Round 3 of chemo on hold due to my stomach pain and diarrhea.  I felt like a kid with a snow day!  So, we took advantage of this unplanned time off and packed our bags and headed North. 

We drove up I35 to Duluth for Malts at Grandma's Restaurant and then on to Bayfield, WI.  We stayed the night, walked along the shore looking for interesting rocks.  We watched the sunset from a beach of Lake Superior.



We stayed in a haunted hotel.  We took the girls swimming before bedtime.  The next morning, we woke up early to catch a tour of the Apostle Islands. We drove back to Duluth and stopped to ride the Timber  Twister, then home again, home again jiggity jig...

The SS William A. Irwin and My Monkeys

One of these sailboats caught our eyes.

My parents may have named me after this sailboat.

Sarah Joy with Sarah's Joy

Daddy's girls: Natalie, Larissa and Olivia.

Pictures from the boat.

Olivia and Natalie

Larissa

Treasure Hunting on the Beach

Treasures Found

Beautiful Day










 

Chemo # 2 (NKTR-102)

Here's the drill. Labs checked a few days before, then I go to the clinic infusion center.  Peripheral IV is started.  Chemo drips into my arm for 90 minutes.  I read magazines, talk to my mom and Mark (if he is not busy), look up cool stuff on Pinterest on my phone and then go home to clean the house, take the kids to the beach and hopefully get a nap. 

Fatigue, nausea and stomach pain are my main  side effects- a small price to pay for killing cancer cells.  My body is still a battlefield, but I am holding my ground.  After the next round, I will have scans to check the progress.

Thank you for thinking of me.  As always, it is what it is. Let go of fear and all the things we do not control.  Believe. It is a beautiful day- I am part of it and so are you.  Get out there and feel your place in the whole- woven in and connected to all....

Garage Sale

My sister, Ashley, lives in the foothills near Vacaville, California.   She lives and works at an animal sanctuary.  Her home is at the end of a long and winding gravel road.  She lives in what used to be the garage of a log cabin, now converted into a small studio apartment with a screened-in porch.  After spending a week visiting my sister's home I was struck by the beauty, the simplicity, the peace.  She doesn't have a lot of space, so she can't have a lot of things.  Each thing she has is meaningful to her, important to her and and reflects who she is.  Being at Ashley's felt like home.  It felt more like Home than my own house. There is just something about how my sister lives that makes me feel both relaxed and alive.

When I returned to Minnesota, I started looking around.  Our house is filled with so many things, too many things.  I slowly started weeding through my stuff.  I asked myself what this thing or that thing meant to me.  Some things had no value.  Some things had no place.  I started thinking I should have a garage sale. My girls helped me sort through clothes and toys and books. We spent rainy evenings washing, folding, preparing. I called my dad to see if he could bring over a few long tables.

My dad stopped by to drop off the tables.  Amore started barking.  Olivia ran to the window, saw her Grandpa and announced, "Santa is here!  Santa is here!"  As far back as I can remember, my dad has grown a beard every winter.  When summer comes, he shaves it off.  Our weather has been unusually cold, snowy and rainy this year, so he hasn't shaved it off yet.  Plus, this past Christmas we got my dad to put on a Santa suit that I found at a Thrift Store.  Olivia hugged and kissed her Santa.  We unloaded the tables.  Then, we waved good-bye to Santa.

Natalie and Larissa helped me fill the tables with our things in hopes that someone would find a treasure and our things would find a good home. It was a little sad unloading nine 18 gallon totes of baby clothes. It made it feel more real that Olivia will be my last baby. As we filled the tables the girls oohed and ahhed over all the small clothes and remembering Olivia wearing them. I did keep a few preemie oneizes and sleepers. I laughed at the food stain on her 3m clothes and am amazed at how small she once was and how much she has grown.  She will be 3 years old in July.

I asked Mark to go through his things, but he says he he needs all his stuff- like his first Mac Laptop that's about 13 years old, his first digital camera that has 3 mpx, photo paper that must have gotten wet and is stuck together, shoes, shoes and more shoes, a printer, his police belt, stuff from college, and so much more.  Mark needs it all.

He hasn't realized this simple truth yet:  There is no UHaul behind the hearse.

Each year, our neighborhood has an annual garage sale. We opened bright and early on Thursday morning- with about 10 sales in all in our area- selling mostly kid's clothes and toys. Thursday was a little slow, most likely because it looked like rain. Mark ran the sale for me for an hour so I could go to the clinic and have labs drawn.  Friday was busy, even after the rain.  Saturday I worked, so I told Natalie that if she ran the sale I would split that day's profits with her. She was happy making deals, she earned herself $40.00. Labs back- Chemo is a go for Monday!!

It was fun watching all our things being claimed by new people.  Treasures found.  Probably the most funny moment was when one lady picked out some stuffed animals and set them down in front of me.  She said she had to get her money out of her "girl pockets" and proceeded to lift up her shirt and feel around for the money she had in her bra.  She put this "girl pockets" money into my hand.  I looked at the five dollar bill.  I wondered about all the other places this money has traveled.   From hand to hand.  From bra to hand... I gave her a few dollars in change and back it went into her "girl pockets."  I bet money has quite a story to tell.  I wasn't wearing any gloves. Hand sanitizer time for me!  :)

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! 

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!  

"Mine!"

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