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.

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.

a

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.

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). 

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.

YUM!

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.

5 YEARS! (with cancer hitching a ride)

We made it to 5 years living and fighting Stage 4 Breast Cancer!

I am so very grateful for everyone who shares this journey with me. I grateful for every act of kindness given to me and my family, including prayers, thoughts, hugs, kind words, laughs, meals, laundry folding, house cleaning, feeding my kids, giving of your time and money. In America, we are told we can (and maybe should) do everything for ourselves. It took me a long, long time to learn to ask and receive help from others. You all mean the world to me. I hope for the blessing of a lifetime to share with you. Thank you!

August 2014

Summer always goes fast... swimming, playing, reading books, bon-fires and sunsets.

For me, August came with one more round of chemo- my last dose of Doxil in this lifetime.  At the start of a new chemo, I quickly learn how it will affect my body and how I will feel. I learn which days will be hard days- with nausea/ vomiting, diarrhea, sleeping too much or not enough, eating, blurred vision or a combination or something totally new- and I plan my life accordingly. I learn how many days it will take to recover, until I start to feel sort-of like myself again. I discover a "new normal" and I work with that.  Ending a chemo almost feels like a break-up. The hope and promise is a let down, though I feel hopeful and excited that this new drug/chemo may be "the One." At the same time I am anxious, because this drug/chemo is still a mystery to me, a sort-of "blind date" and I anticipate the "new normal" to come.

I feel so blessed to have come this far with cancer, but my life is so precious to me. I still want "my lifetime". There is a big world out there I would love to see and would love to show my family.

For now, here's to crossing off items on my Bucket List and being aware of surprises I never even thought to put on it!

Sharing a little of our August Joy:

Bucket List: Minnesota Twins Game

Minnesota State Fair

Bucket List: See Natalie start High School

Dr Laudi recently asked me how I was doing. I said "This world sucks!" He asked what I wanted.  I said "A Cure."

More pain... I had a PET scan on August 25th and I knew the scan itself would not be pleasant for me due to the increased pain in my left hip, but the results still caught me off guard. The tumors I had before starting Doxil are bigger and now I have some new ones in my thyroid gland, cervical spine, lumber spine, left hip, liver and more. So many more we just quickly started searching for Clinical Trials and other chemos. The good news is I can do more chemo or start radiation. The bad news is we don't have many more chemos to choose from and having radiation could put postpone or even eliminate my chances of getting on a Clinical Trial, because I may not meet their criteria.


So, as August prepares to greet September and we kiss our summer goodbye ... we will be taking roads headed south to pick some new brains and touch some new hearts to see if they may hold the key to MY lifetime. Mayo Clinic here we come.

Please keep my family in your thoughts and prayers.

F***! Now what?

The damn "red devil"  aka Doxorubicin (or the lipid-based form called Doxil that I am currently on) can damage your heart, so a person can only get a certain amount in a lifetime.  Today at my appointment, Dr. Laudi informed me he did the calculations and I have now reached my maximum dose and today I got my last dose ever of Doxil. Dr. Laudi has has sent my chart to Mayo to see if he can get me on a Clinical Trial. That's the latest cancer plan. Most of my appointment was spent talking about our summers, my kids and Dr. Laudi's trip back to Malta with his wife and children.