Monday, March 31, 2014

Biopsy

My biopsy was scheduled for 8:30am at Mercy Hospital.  I was told to arrive at 6:30am, so Mark and I headed to the hospital.  He would drop me off and go back home to get Larissa on the bus and pick up Olivia.  My mom was working her night shift at Children's Hospital.  She really wanted to be with me and texted me positive energy and love.  I texted her some pictures...


Here we go.



Name band- check.


Functional outfit- check.


My Care Board- check.


PIV started and running- check.


Little girl who is ready to go
and wants her Mom to go with her.

Now, we wait for the results...

Thursday, March 27, 2014

PET results

 I had an appointment with Dr. Laudi this afternoon.  He looked at all my data and pulled up my last 3 PET/ CT scans (Oct, Dec, last Monday) for comparison.  Here is what we learned:

-My weight is down another 3 lbs. 

Tumor spots:
-In my liver (there in Oct, gone in Dec): Still gone!
-Left armpit (appeared in Dec): Gone!
-Right scapula (appeared in Dec): bigger
-L4 (improved in Dec): now advanced and includes L5
-Left hip/ supra-acetabula area (not new): still there

-New neuropathy (tingling/ numbness) in legs and fingers: could be chemo-related

Options:
-Hormonal Therapy: I tried Tamoxifen early on
 (Remember, I did not do well on this in the past.  It didn't work and I felt like I was living my life through an out of body experience).

-Chemos used so far: 
*Adriamycin- Cytoxan (worked the best, but there is a lifetime limit)
*Zeloda
*Gemcitabine (tried to kill me)
*Abraxane
*NK-102
*Erubulin

-Could possibly try Liposomal Doxorubicin (Liposomal means it is mixed in a fat solution. Doxorubicin is the same drug as Adriamycin- all these drugs have a couple different names depending on which company is producing it.  Drove my mom and millions of students taking Pharmacology Classes crazy.)

-Find another chemo or clinical trial.  At this point Dr. Laudi expressed frustration, because the tumor samples they took from my original tumors in my breast are gone and I have never had significant tumor size or location to get more.  Since the tumors never recurred in my breast, he wonders if they have mutated.  My original tumor was Estrogen+, Progesterone+, Herceptin-.  If the cells have mutated they could be Herceptin + now and that would open up more chemo drugs and clinical trials for me.

-Targeted Therapy. This got Mark's attention! Mark discovered this therapy in his early research and has been asking for it all along.  Dr. Laudi explained that Targeted Therapy is not chemo.  Chemo affects cell DNA. He used a car analogy.  To get a car to go, a lot of things have to happen in a certain order.  It's like a domino effect. Which pathways feed these particular cancer cells?  Once the pathways are determined- and tumors can use multiple pathways- then the therapy tries to block them. 

"Steve Jobs lived 5 years using this type of therapy." Dr. Laudi said.

"Well," said Mark, "Sarah will go beyond that." 

Dr Laudi said I would need to have another biopsy.  The L4, L5 spots are accessible, so they would most likely be used.  The tumor tissue would be sent to a lab called Foundation One.  They would look at 500 genes within the tumor cells and determine which genes are activated and which pathways feed these particular cancer cells?  He googled "Genetech" and showed us diagrams of these growth factor charts. 

At this point, additional chemos will be a last resort.  Chemos work blindly and affect other healthy cells.  Chemo has a short longevity.

The plan:
I will have a biopsy of the tumors next week.  The bone will be sent to Foundation One.  They will also look at Estrogen/ Progesterone/ Herceptin receptors.  If they are now Herceptin +, I will have many more treatment options.  We will get a printout of all the data and mutations.  My therapy will be targeted to MY cancer cells.  

Prayers would be deeply appreciated...






Monday, March 24, 2014

PET Scan

This morning I had a PET/CT scans to see what my cancer cells are up to.  I always schedule my scans for 6:30am, because I can't eat or drink for 4 hours before the scan.  Now, they have a new rule: No Bras during the scan.

My doggy bag

Wednesday, March 19, 2014

Home again, Home again... jiggity jig



Before we even hit the highway,
 
Olivia was fast asleep.
 
 
We drove another 2000 miles
through 3 more snowstorms
(one almost stranded us).
We arrived home this morning at 6:00am.
 
 

 
 
Driving through a mountain.
 

Bear friend.
 
 

Sleeping Beauties.
 

My mom's Corolla
needs a bath and a nap
like the rest of us.
 

Monday, March 17, 2014

I am lucky

 
Winnie the Pooh once said,
"How lucky I am to have something
that makes saying goodbye so hard."
 
 
 
This beautiful family
is one of those somethings to me...


 
 


Saturday, March 15, 2014

"We come from the land of the ice and snow..." for some "California dreaming..."


This about sums it up!
 
Next to John and Ashley's Front Door.
 


We have had some beautiful days in sunny California.  We have been enjoying the park with everything green and growing!  This is an incredibly healing environment, especially for Minnesota people.  I usually need a few days to recover after chemo, but not here.  We have been taking long walks, playing with Olivia at the park, sitting together outside with bare feet.  It's those simple things that make me feel both peaceful and alive. 

Ashley and John brought Maya home on Friday, March 14. There is nothing quite like holding a baby.   It's fun to see my little sister as a mother.  I reminded her she used to refer to my children as "snot machines" when she was young.  She wasn't sure if she wanted children of her own.  She wondered, as we all do, if she was up for the job.  Ashley is one of the most compassionate, caring people I know.  She has already cared for many lives in this world.  It's funny how we sometimes don't see the most beautiful things, the most obvious things, in ourselves. 

I have enjoyed getting to know John.  He is kind, supportive and loving.  I am grateful and happy for them.  John's parents, Mary and Dan, invited us over to their house for dinner.  We had a lovely evening, talking and laughing. Olivia enjoyed playing in their backyard and meeting their chickens. 

John also gave my mom and me some accupuncture.  Ahhh... 
I love accupuncture.  

Some random pictures:


Napping in the sunshine.
Beautiful green spaces

 
 
 
 
Playing at the park.
 
 

 
Holding Maya!
 
 
 



Peeking into the stroller.



 
Olivia working on making some pretty jewelry
with a bead kit John's mother, Mary,
gave her.
 
 
This tree is next to John and Ashley's deck.
A squirrel lives in this tree,
 peeks around it and chatters
when we sit on the deck.
 
George lounging in the sunshine.
 
Maya
 
Maya and Mama.
 
We soaked her up.
 
All wrapped up and cuddled close.
 
Swinging!
 
Playing!
 
 
Teeter-
 
-Totter!
 
 
 Thank you,
Ashley and John
for sharing your home,
your furry children,
and your sweet Maya with us!
 
 
 
 
 
 
 
 
 
 
 
 
 

Wednesday, March 12, 2014

Happy Birthday, Maya Magnolia Frink!



We arrived in Davis, California after 11pm.  Ashley was lying in bed, looking at something on her computer.  We took one look at her and knew she was in labor.
 
Our mom sat down next to Ashley and asked, "How are you?" 
 
"A little uncomfortable." Ashley told us.
 
John reported some regular contractions.  And we encouraged Ashley to get up and take a short walk through the park behind their home. 
 
We were exhausted and got settled in for the night while John drove Ashley to the Sutter-Davis Birthing Center about 10 minutes away from their house. 
 
I woke up around 4:30am when they came back home to sleep, because contractions weren't getting closer.  Then, I woke up at around 6:00am, when Ashley's water broke and they were headed back in.
 
My sister is a brave woman.  Her baby was known to be in a breech-butt first position and doctors had been unable to manually move the baby to a head-down position.  The doctor would push on her abdomen and try to move and coax the baby, but the baby would always settle back into her favorite spot.  Ashley and John were seeing a Midwife for their prenatal care and were approached to speak to a filmmaker doing a documentary about the working relationships between Midwives and Obstetricians.  They were interested in filming a breech delivery. 
 
Ashley and John did their research.  They were not willing to put the baby or Ashley at risk, however, if the baby could be born without a surgical intervention, they wanted to try.  
 
The filmmaker had notified Ashley and John that she would be in California for 3 days around the baby's due date.  Ashley left it up to the baby if they would participate.
 
So this morning, as Ashley and John went back to the birthing center, a surgical team was assembling, in case a c-section was necessary, and the filmmaker was en route to film the birth. 
 
Maya Magnolia Frink was born March 12 at 8:55am.  She weighs 8 pounds, 3 ounces.  She was born breech and her birth will be part of this documentary:
 
 
 


Ashley, John and Maya
 







Baby Maya




Mama and Baby





Olivia falling in love



Maya and Grandpa


Look!  We have the same hair!

Congratulations, Ashley, John,
Mousie, Layla, Zorra,
George, Orange Kitty, Maisie
and Maya-
You have a beautiful family!

 

Monday, March 10, 2014

California Roadtripping + Chemo 5/2



After my Chemo- Round 5/ Dose 2- I AM OUT OF HERE!  Olivia and I are heading west to California with my parents to visit my sister, Ashley, her fiancee, John, and hopefully to meet their new baby who is due TODAY.  Larissa was my chemo buddy this afternoon.  We had Jimmy-Johns sandwiches and lots of laughs.

Cookie as big as her face!





Fun


taking


Selfies!

 
After chemo, we went back home so I could finish packing, get things settled for Mark, Nan, Larissa and Amore and wait for my parents
to pick Olivia and me up.
 
 
 
 
Roadtripping
 
My parents are some serious roadtrippers.  My mom had worked her night shift the night before and slept during the day.  They took turns driving and sleeping while Olivia and I rode along.  It takes about 30 hours to drive about 2000 miles from Minnesota to Davis, California. 
Here are some moments from the trip:
 
 
In Iowa, being tall makes a person
a bathroom-stall-peeper.

 
Olivia burning some energy with Grandma.



Midwestern sunset.

 
 

Salad time





Olivia and Grandpa with a new friend.




Wet butt.

















 








A bit surreal to watch Abraham Lincoln
get belted by a blizzard.












Wyoming snowstorms and accidents.


 

More snowy mountains ahead.


 

Check this out-

This Nevada Rest Stop is basically a shed
with a hole in the floor
and a plastic cone positioned over the hole
with a toilet seat attached.
Olivia took one quick look at that setup 
and suddenly
she didn't have to go potty anymore. 
My mom held Olivia above the seat,
her car keys
dangling dangerously from her finger,
over that ominous hole.
Olivia refused to give up her pee.
I grabbed the keys.
We laughed.
My mom said Olivia was lucky
she didn't drop the keys.
We would have had to send someone
down the hole after them...
someone very small.

Somehow, we expected a bit more
from gambling, glitzy Nevada. 


Nevada, thanks to you,
Olivia decided
it was better to hide under a blanket 
and better to pee and poop in a pull-up
rather than risk falling into your roadside hole.
 
We named this pull-up "Mr. Stinky." 
We asked Olivia,
"What should we do with Mr. Stinky?"
She suggested we throw Mr. Stinky
at the mountains. 
That wasn't even a choice.




Bye, Bye, Mr. Stinky.
Sweet Dreams, Nevada.
Sweet, Stinky dreams.



FYI to the people trying to sell stuff:
To people in the medical field
a "Blow-out" is a poopy diaper
that has exceeded it's maximum capacity
and then some.
"Blow-Out" as a marketing tool
either grosses us out
or makes us laugh
or brings up memories better left in the past.
A "Blow-Out" does not entice us to buy.