Tuesday, January 6, 2015

be careful what you wish for

I had my scans done yesterday.  I definitely have a gut feeling what they are going to say when we get the results tomorrow.  Because when the CT machine told me to take breathe and hold it in, my right side hurt.  When I laid on the MRI table I had to adjust my stomach just so so that I was not uncomfortable.  

The tumor feels like it's growing (it's been going on for weeks).  Josh tries to find different explanations, hoping maybe the tumor is ripping away from my organs.  This is the same pain I felt twice now.  Right before I started PD-1 in Florida in 2013, and right before I started the BRAF drugs a couple of months ago.  

If indeed the BRAF drugs are loosing effectiveness and the tumor is still too involved to resect it, I think we would do PD-1 again.  It is now FDA approved so I can get it in Utah.  It was approved with the stipulation that you have to fail IPI and the BRAF drugs (which is why I am on the BRAF drugs).  

I have a tradition to read my journal entries from the past year on New Year's Day before I make resolutions.  2014 my only resolution was to survive (I was very sick a year ago).  I am happy that we made it through the year, for sure.  I told Josh that I would just stick to that same resolution, and he told me to 'set realistic goals'.  And we kind of laughed, but we are pretty terrified.

Last year something happened that I feel very grateful for.  When I was diagnosed at stage IV there was cancer in my liver, bones, and tumors scattered throughout the body.  After doing all my research I prayed that I would be able to try everything (at the time the major options were IL-2, IPI, TIL transfer, and BRAF).  I never wanted to wonder if something would have worked if only we had the chance at it.  In 2014 this prayer was answered.  

We will of course keep trying new things (and old).  When discussing with the boys what will likely happen next (PD-1), Luke asked us what would happen if that doesn't work.  I explained that at some point they kind of send you home to die (I wish I could say that I said that a little gentler, but I was kind of put on the spot).  He quickly decided, "Well, that's a bad doctor."  So there will be no giving up over here.  Josh's work actually switched insurance companies this year and our insurance will now cover some of the major cancer centers in the U.S.  There might be more trials and more travel in my future.  

Who knows?

I will let you know what happens tomorrow.  Thanks for all the kind acts and thoughts and prayers on our behalf.  We are totally going to be okay.  Right?


  1. Praying for peace and hope for you and your family. I'm grateful you blog. I have learned so much from what you write. Your family is inspiring. Keep fighting!

  2. so glad you posted an update. keep fighting, keep going and keep writing.. we pray and think about your family :)

  3. You have been on my mind all week. 💋

  4. From a total stranger who checks daily for an update, sending prayers to you and your family. Hoping for good news and for healing in 2015.

  5. Thanks for posting, I have wondered how things were going. Positive thoughts and many prayers in behalf of you and your family. We are all on your team!