Wednesday, December 31, 2014

Sorry to leave you in the dark...

December was a busy month.  Mark, the girls and I traveled to Chicago on 12/8/2014 and 12/22/2014. The Chicago Clinical Trial appeared to be working and I started the second month, then I had my last PET scan of the year. Today, we learned the cancer was growing. If we could not find a way to get ahead of the growth, I was told at best I would have six months to a year.

We looked at more Clinical Trials and found one at The Mayo. We chose a chemo that showed great results on liver tumors. The plan was to do 2 rounds of chemo (one dose per week for three weeks, then one week off) followed by another PET scan.

Thank you for all your Prayers and support. Thank you to the Angels that helped get us to Chicago and made our Christmas brighter.

Christmas 2014

Friday, December 5, 2014

Just Breathe and Pray

Since starting Lacitanib, I have been having increased pain at all the sites of my tumors. Dr. Laudi ordered additional pain meds which have been working well. Mark researched and found that increased pain may mean the drug is working! 

I close my eyes and imagine these tumors screaming out as they desperately try to maintain their existence in my body. Their growth factors- their food, so to speak- is cut off. They are not going without a fight. I am ready. I breathe in and breathe out. I feel empowered to be fighting on their terms, the field leveled. I have their attention. I hold my ground.

Close your eyes with me. Breathe in healing, hope, peace, love. Breathe out healing, hope, peace and love to share... Visualize these tumor cells letting go of their hold. See my body break them down- quickly, mercifully- and wash them away. 

Thank you for sharing my vision. I am grateful for you. 

*My next trip to Chicago with Mark and the girls will be on December 8. At this appt I will have the usual- pee and a BP- along with scans that will tell us if Lacitanib is working.

Monday, November 24, 2014

Flying again

Mark's job is flexible, but the cost to go to Chicago as a family is about $400 to drive. For me to fly it's about $100 plus a little spending money. I planned to make this trip alone, but then my dad called and said he would like to come along. My dad is a smoker. In the past, he has had a lot of anxiety about flying. Once, a few years ago, I remember him visiting my sister, Ashley, in California and dawdling on his way to the Sacramento airport. He got to the airport and realized he had missed his flight home. He ended up staying an extra week in Cali. 

I thanked my dad for his offer, but told him I was fine to go alone. He assured me he wanted to go with me. He said I didn't have to go alone. He said he was working on his fear and he wasn't afraid to fly. Mark searched and found a ticket for my dad. He also paid the extra fee so we could sit next to one another on the plane.

Here we go...or not
(first, they had to de-ice the plane)
We took the blue line to the green line to the end. We walked through the snow to the Hospital. I got my blood pressure checked. I peed in a cup. A quick talk with the doctor and we were on our way.

My pee and Me
My dad has never been to Chicago, so I took him to Giordano's for a pizza lunch.


Then, I took him to see the bean.

Me and Dad reflecting

Our next stop was The Field Museum.

Would have been fun to spend the night 
in the museum!

We took the bus to Ghirardelli for a malt.

(Sorry, no pic. Just look at my malt from my last visit and multiply by two!)

Then, it was time to go back to train to the airport to home.

Our flight was delayed by an hour, but we didn't care!
It was a great little trip with my dad!
Thank you, Dad, for coming with me!

Thursday, November 13, 2014

Planes, Trains and Automobiles

Don't we all wish we could fly away for the day and be back home in time to sleep in our own bed? This is my first solo trip to Chicago. The joy of working on the weekends is getting up 3:30 am to go to the airport.


I love Chicago Metro System! I can take the trains and buses everywhere I want to go. I need to take the trains first- the Blue Line from the airport to the Green Line to the end, then a bus ride or walk the 4 blocks to the hospital.


It's almost funny that I have to go all this way to get my blood pressure checked and to pee in a cup. It seems I could do those things most anywhere, but I have to follow the clinical trial. This trial may hold a potential cure for me or it may buy me more time on this earth. My inconveniences seem small compared to that, so I do it. Though, it does take a toll on our family and our pocket book.

Today, I traveled to Chicago for this:

And this:

Then, I moved on to some fun. I had a whole afternoon to myself. I decided to go to The Art Institute of Chicago. It's been about 16 years since I have been here. Just a small sample of the art I saw...

Then, it was time to take in The Magnificent Mile to do some window shopping. I stopped for a treat before I caught the train.

Wow! What a long day! I took the trains. Waiting for the plane...

and in about an hour...the automobile.

Monday, November 10, 2014

Chicago, Here we go again!

Here we go again.  After two more 12 hour shifts, the first snowstorm of the season was looming on the radar. The first flakes started flying as we hit the road.

Snow starting to fall
Girls and I falling asleep Zzzzzzzzz.
 By the time we crossed the Wisconsin border, the snow was blowing and it was getting hard to see the road. We saw a jack-knifed semi and many cars in the ditch. We journeyed on. Illinois welcomed us with sunshine coming up over the horizon. The blinding snow stopped.

Bathroom break
We made it in time for my appointment. I had vital signs taken, labs drawn, and filled out questionaires. We went over the side effects of Lucitanib, the drug I will be taking. It can cause anorexia and can damage the heart which is the reason behind all the tests and monitoring. Lucitanib blocks the action of certain molecules called "angiogenic factors" that may cause tumor cells to grow. The biopsy I had back in April identified that I had elevated levels of the factors that Lucitanib blocks. Due to the potential cardiac side effects, I will have check my blood pressure at home twice a week.

This drug has shown promising results in previous clinical trials. This is a phase 2 Clinical Trial specifically for Metastatic Breast Cancer. The trial will compare the efficacy of 2 doses of the drug. Participants are randomized to the dose we are given. I am the first person in this trial.  



Study Questions

Part 2

BPs with "Doctor's Office" Accuracy!

There was no peripheral IV start. No waiting for the Pharmacist to mix my chemo, then waiting for it to infuse. Lucitanib is a pill. Down the hatch it went. After I took my first dose, I had to wait two hours, then have another EKG to compare with my baseline.

Study Drug


The hospital sits next to a beautiful park, Washington Park. We walked together, exploring and enjoying a lovely 60 degree day. We found a massive, breathtaking sculpture called The Fountain of Time, created by artist Lorado Taft in 1920. An ominous hooded figure, Father Time, stands alone and faces probably 100 carved figures as they move past in all the stages of life. Birth, family, struggle, love, art, religion, war,.... death all pass time. There were waves and movement in the concrete, a couple kissing, a mother holding her child, a woman suffering... all melting into one another, part of each other in a real and lasting way.

Maybe many people who experience this sculpture are moved by it in some way. I saw myself among those figures. I feel my time is running out...

Fountain of Time

Fountain of time

Starting this drug means we need to follow the clinical trail to the letter. All of my labs and scans have to be completed in Chicago, so I'll be back two more times in November. Then, in December we will do scans and see if it is working. If it is working, we need come back 2 weeks later. Then, once a month after that.

Drive home

Fun treat on the way

Monday, October 27, 2014

Chicago, Here we come!

After working two 12 hour shifts- getting off work at 9:30pm- we packed up the girls and the car and headed to Chicago. According to our phone GPS, only 6 hr 51 min to go.

How far would you go for a new treatment? For a potential CURE? And at what cost? For us, a 7 hr drive or a one hour flight seemed like small things.

6 hour 51 min
I'm thankful I have a husband that likes to drive. He let me sleep the whole way. We stopped in the morning to have breakfast a pecan waffle with whipped cream and crispy hashbrowns.


Then, it was off to Hospital Land. We checked in and handed over my medical records. We were roomed and waited for the doctor to come in. We ran down of the last five years of my life with breast cancer. We learned what the study would entail.

Waiting for the Doctor
Then, it was time for tests. First, the EKG and then a head CT. After all the tests were complete, we were told we had to wait a week or so for all the results. Then, it would determined if I met the criteria for the clinic trial.

After a day at the hospital, it was time for Chicago style pizza. Yummy!
We spent the night and headed back home the next day. First, we stopped a for doughnut.

Wednesday, October 22, 2014

Out of the Blue

We received a phone call from the Mayo Clinic today to see if we wanted to be put on a short waiting list for a new clinical trail. Of course, we said YES! He told us to continue with the plan for radiation and he would call us in the next week or so with further information.

Later this afternoon, the University of Chicago called to say that the clinical trial that Dr. Laudi had inquired about was now open. They wanted us to come to their hospital the following Monday to get baseline numbers. I would have labs, an echocardiogram, an EKG and a CT of my brain (always reassuring to see it's still there!).

From NO new options to TWO!!!

Note: A week later we received a call from the Mayo reporting that their trial was full.

Thursday, October 9, 2014

PET/CT Results

We did one more round of carboplatin. About a week later, Mark and I were out for a date night. I noticed I had been having increased back pain, so I asked Mark to call the clinic in the morning to see if we could move my scan date up.

They were in able to get me in the next day and I had orders to go straight to the clinic afterwards to read the results. Dr. Laudi pulled the scans up and they showed new tumors in my rib and the one in my lumber spine that was pushing into the spinal cord space causing the pain.

Olivia is bored.
Photo by Olivia of Dr. Laudi
as he ponders our next move
Dr. Laudi called the the research nurse to see if she had any clinical trials that I would qualify for. She had nothing. He referred me to the radiation clinic. I asked him about other hospitals that might have a clinical trials. We looked at the U of MN, but they had nothing. I asked about Chicago. We looked and they had one, but it was not open. Dr. Laudi said he would call in the morning to see what the status is of that clinical trial, if it would be opening soon and if I could get on it.

Monday, September 8, 2014

Carboplatin- my new chemo

After a bust at The Mayo, Dr Laudi considered hormone therapy or another IVchemo. A chemo called carboplatin was chosen, because Dr. Laudi felt it would work faster on the liver tumor. We would do two rounds of carboplatin followed by PET/CT scans to see if it was working.

Chemo Buddy Larissa
Hanging out together.
Carboplatin infusing.
Neupogen for after chemo
to increase my body's neutrophils
(cells that help fight infection). 

Wednesday, September 3, 2014

The Mayo Clinic

Here we go:

7am on the road

 We lucked out and found a meter to park the car with 20 minutes to spare before we had to check in.

We made it!

We shared a quick breakfast while we waited.

We checked in and were sent down to lab. Two pokes and two tubes of blood.
My blood got to take a ride on conveyor belt. Our next appointment was not till 2:30pm. With time on our hands and a beautiful day outside, we did a quick Google search to find some fun things to see and do.

My blood going for a ride.

We chose to tour the Mayowood mansion, the home of Dr. Charles Mayo co-founder of the Mayo clinic. The house was built on a beautiful on farm land, close to the river. It was a great tour.

 After the we grabbed lunch, we took a walk around the Mayo.


The Mayo and Me.
Beautiful, interesting art.

   We checked in again and waited. After my weight and vitals were done,  Dr. Hoyday came in and asked us what we wanted for this visit.

I told him, "I want a cure."

He did not want to give me false hope. He said, "I have no cure or magic pill."

We started going over my timeline of the past 5years. He was a little confused about my pregnancy in February 2009 and what treatment I was receiving at the time (I was getting radiation, and had PET/CT scans). We told him about our miracle- our gift from cancer- Olivia Joy. We talked about the hormone therapies, the chemos and the clinical trails. Then, we went over my treatment options still available:
  1. Chemotherapy, ex: Carboplatin, Navelbine, cmf
  2. Anmidex
  3. Exemestane plus Affintor
  4. A new clinical trial Biopsy-Her2 or being put on a waiting list for a current clinical trial
He asked if we been to the University of Minnesota Breast Center. We have not. He said it would not hurt to go there for their research knowledge.

Mark asked,"Don't you guys talk?"

Dr. Hoyday said, "No".

This is an example of our fragmented and broken our health care system. After voicing our concerns about hormone therapy, he felt Exemestane plus Affintor would be a great plan. It would consist of two oral pills and I would be watched closely for side effects. He did not have any new clinical trails to offer at this time, unless I want to do a biopsy. He is going to put me on the "wait-list" for up and coming clinic trails. He told us to take some time and think it over. He handed us my stack of files and shook our hands good-bye.

Five years of cancer treatment.
By the time the appointment was over it was after 5pm. Mark called Dr Laudi to leave a message about the appointment. When he called back, Mark told him about the appointment. Dr. Laudi was also disappointed that there are no new treatments. He gave is input on the treatment options we talked about. Dr. Laudi feels that Chemo would be best treatment because of the liver tumors. The new plan is to start chemo next week.

Thank you for your thoughts and prayers.