"Fun is what you bring with you!"

I work in the Materials Management Department at Children's Hospital in Minneapolis which means I make sure the supplies that nurses and doctors need to take good care of children are stocked and available.  Today, in my travels throughout the hospital, I happened to look out the window at a beautiful summer day and I saw this: 

I found a flyer.  Apparently, there was an event going on right outside the hospital.  A motorcycle group rode to the hospital and displayed their bikes in an effort to raise money for cancer awareness.  From inside the hospital, it looked like a party, so I talked my co-worker, Soloman, into checking it out with me. 

The first thing we noticed was a big bouncy-house.  Things were just getting set up, not many people gathered yet.  I couldn't look at that bouncy house without wanting to bounce. 

"Soloman, let's go bounce in the bouncy house!"  I said.

He shook his head and laughed, ""No."

"Ok, then.  Your loss."  I walked up to a table and had to sign a waiver in case my bouncing led to serious injuries.  I took my chances.  I climbed in and I bounced.  A person can't bounce without laughing.  Try it sometime.  It's impossible.  People can't watch a person bouncing and laughing without laughing, too.  I love win-win-win situations!

A vintage car pulled up onto the sidewalk between the hospital and the specialty clinic building.  The license plate said "Cancer" and it had big frowning faces painted on it.  I approached the man who drove it and asked him about it.  He told me his grandfather had died of cancer and he is trying to save people from cancer by raising awareness.  He calls this a "No-Mercy Movement."  I noticed there were signatures on the frowning faces.  He said he has people with cancer sign his car.  I told him I have cancer.  He asked me to sign.

 

To see more info visit cancercar.org.  Not a bad way to spend a lunch break!!!

 

PET scan results

Results: My L4 lesion is still there, but slightly smaller.  Dr. Laudi has decreased the dose of NKTR-102 to decrease the side effects I was having.  He said this chemo typically goes slow and acts longer.  That is why it is given every 21 days or so. 

I looked at the PET scan images.  He pulled up my previous ones from May and December.  It didn't look smaller to me from May, but Dr. Laudi said the radiologists that read them are taking precise measurements.  These measurements showed decrease in size. 

Since it is only one spot, my mom asked about radiation.  That would be a quick kill for those cancer cells, but Dr. Laudi had several reasons not to do that right now:
- First, the area is not causing me pain.  If it was painful, then radiation.
- I can't get radiation and chemo at the same time and he feels with the decrease in dose the side effects are manageable AND the lesion is getting smaller, so it is moving in the right direction.
- The lesion itself is a good visual marker of how the chemo is working. 
- Once radiation is used at that site, it can't be used to that site again.  Dr. Laudi says he wants to keep that card in his hand in case he wants to play it later.

I agree with the plan.  We all do.  Only once I had to say, "Hey, Mark, this is about me."  I think Mark was trying to sell Dr. Laudi a house in our neighborhood during my appointment.  Mark is not a realtor.  Mark was talking location, man-made lake, opinions on builders, and the fact that we have several doctors in our neighborhood already- Mark knows, he drives them all to the airport.  I don't know what else was said.  Appointment was done.  Time for me and my mom to go.  I am used to this.  Mark likes people and likes to talk.  He also knows his way home. 

Overall, good news! Labs next Thursday and if they are good, NKTR-102 #4 on July 22. 

Dr. Laudi and Olivia Joy

 

 

Dr. Laudi, my Oncologist, holding Olivia nearly 3 years ago. 

 

I think it's a stretch to call something like cancer a blessing, but I have no other word to express my feelings, my gratitude for the opportunity to know this compassionate man and to have a daughter I never planned or believed was even a possibility (given the ovary suppressing drugs I was taking). 

 

Dr Laudi said, "Hope springs from life in ways we don't expect."  He is right.  It does. A little hope goes a long way.  It led me to here.  It carried me to now. 

 

Cancer has presented me with challenges.  Cancer has offered me gifts.  I am open to this balance both bitter and sweet.  I have cursed cancer at the top of my lungs using 4-letter words that burned on their flight from my lips.  I have been humbled by cancer as it forced me to the present moment and we spoke to each other, whispering words that are often left unsaid.  Dr. Laudi and Olivia are two of the many, many gifts cancer gave to me.   The teachers in life that can touch us so deeply, teach us so boldly, awaken us so completely.... are simply and profoundly... a blessing.     

 

 

Happy 3rd Birthday, Olivia Joy!!!

 

 Olivia Joy is 3 Years Old Today!!! 



 

Thank you to Olivia's many Mothers

who helped feed her

for the first year and a half of her life.  

Thank you to everyone

who travelled with us to this Happy Birthday! 

Inside of her little self- Olivia carries

every hope, every dream, every wish, every prayer

you whispered to her from your heart. 

Celebrate with us!  She is your baby, too! 

We are grateful for each and every one of you

And so grateful for her...

 

2012 to 2013

 

Chemo #3 (NKTR-102)

At 11:00am, I had my 3rd dose of NKTR-102. This dose was decreased due to my side effects. Repeat Chemo #2.  Uneventful really.  A little blurred vision, but I know it will pass.  For a while the world will appear all soft and fuzzy and, instead of having one wonderful thing after another, I have two!

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