iwantmorethanapinkribbon
  • Blog
  • My story

The new game plan

6/18/2015

4 Comments

 
Picture
Sitting on a patio in SF, waiting for my next appointment. The pin on the jacket is for Metavivor, a non-profit who puts 100% of their donated funds to metastatic breast cancer research.
Whenever there is disease progression, you can be guaranteed there will be a flurry of activity as a new plan is put into place.  While we expected my latest scans to show progression, we didn't really expect it where it showed up!  Therefore, most of what was discussed before the scans as possible treatments were set aside in order to react to what was reality.

First of all, God is good!  The fact that this disease is moving throughout my body doesn't change his goodness.  I don't pretend to understand what's happening and I have tons of questions, but I do, to the core of my being, believe in the saving grace of my loving Savior.

Next, I'm grateful that the disease progression was in the bones.  Yes, it's painful and irritating, but it's not life threatening.  This isn't to dismiss others who are dealing with organ mets ... but simply an acknowledgement on my part that things could be a whole lot worse at this point in time in my life, but they aren't.  Lots of thanks for that.

Thirdly, while I am happy with the response I had during the 13 months of Xeloda, I'm not going to miss that drug at all!  It will take a month or more for my hands to return to normal.  I won't miss the peeling, cracking, blistering side effects at all.

Moving on to what's next.  I am back on a hormone treatment (Femara/Letrozole (most drugs have two names) ) which is an easily tolerated oral drug.  One tiny pill every day, day in and day out.  I was also approved by the insurance company for the new drug Ibrance/palbociclib.  Big thanks to my medical team at UCSF for going to bat to get approval after the insurance company gave its immediate rejection without reading any of the documentation submitted with the request.  Ibrance is also an oral drug, taken three weeks on/one week off.  I will start it tomorrow.  The most common side effects are neutropenia (low white cell counts) and hair thinning.  Just in time for summer!  Letrozole alone has a average progression free efficacy of about nine months, but when combined with Ibrance, jumps to 21 - 24 months.  I'm hoping and praying that I will, once again, be an outstanding responder and get those 21 - 24 months or more.

The tumor in my hip socket takes up 60% of the transverse diameter of the femoral head, placing me at high risk for fracture.  While I am classified a high risk, this does not mean I'm at imminent risk.  However, we're going to zap that bugger with radiation, just like we did with the neck tumors two-and-a-half years ago.  I will have 20 radiation sessions beginning July 13.  In the meantime, I have to use a crutch to reduce the weight placed on the hip.  I'm getting better at using it ... and my hand is toughening up.  I got a blister on the palm of my hand after one day, but it's already calming down.

The reason for the delay in starting radiation is because we are taking a family vacation July 1 - 12.  While we could have tried to reschedule everything, the entire medical team didn't think there was a serious problem with my taking the trip as planned.  (There's more than one family involved in the trip.)  However, for the first time, my travel wheelchair will actually travel with me!  We purchased it three years ago to help with Art's mother when she came to visit and since that time, it's been loaned out for several other people to use.  It's been to southern California (twice!) and to France and now it's going to Mississippi and Florida!  Woo hoo!  I should keep a mileage log for it.

I've been to San Francisco four times in ten days -- I've seen three oncologists and spoken to two others on the phone; spent hours on the phone gathering information and pulling things together; arranged for radiation to happen only one mile from my house and got copies of all my scans and reports to that location.  That's the big flurry of activity, but now it's done and everything has settled down.  My next appointment is June 30 for radiation simulation (where they map out exactly how they want the rays to go). 

Rachel is in Mexico with the church youth group and Michael is hacking his lungs out as he started his summer vacation with a cold.  Today is the first day he got out of his pajamas.  Poor guy.  He is doing better now.  Art continues to work hard to provide for us and it's always a joy to see him at the end of a day.

I'm now getting ready to make some granola.  Yes, you wish you had some!  :D After that, I'll write out some more of Judges ... I'm up to Samson now. 

Thank you again for your ongoing support.  It means a lot.

"So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There’s far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can’t see now will last forever."  (2 Corinthians 4:16-18, The Message)

4 Comments
Alicia Lovens
6/18/2015 10:59:01 am

Hang in there, I hope you get good positive results from your new drug plan. I was so fortunate that chemo and radiation got rid of the BC crap. Sending good thoughts your way. ~~~alicia~~~ Castro Valley, CA

Reply
Nina Clark
6/18/2015 12:43:38 pm

Jim and I appreciate your openness about your pilgrimage. Helps us in our praying for you to be so much more concrete. Blessings and love, Nina

Reply
Sharon
6/18/2015 01:05:28 pm

What can I say ? We have been friends for years and even roommates at one time . You continue to inspire and encourage . I love you for that and for just being you . Much Love ~Sharon

Reply
Pat
6/26/2015 01:41:04 am

Thanks for the update. Enjoy the vacation. The people In our lives make the journey worth traveling...for all of us. Glad you're part of mine. Lots of love.

Reply



Leave a Reply.

    God's Story

    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

    The Best Metastatic Breast Cancer Blogs of the Year
    Healthline

    Archives

    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    November 2012
    October 2012
    September 2012
    August 2012
    July 2012
    June 2012
    May 2012
    April 2012
    March 2012
    February 2012
    January 2012

    Categories

    All
    Blood Test
    Breast Cancer
    Chemo-cap
    Chemotherapy
    China
    China Post Office
    Construction
    Fish Testing
    Hair Cut
    Hair Loss
    Her2
    Hong Kong
    Humor
    Joy
    Losing Eyebrows
    Nadir
    Pink Ribbon
    Shengli
    Staging
    Starfish
    Symbolism
    Tnm Rating
    Tumor Shrinkage
    Victory
    White Cell Count
    Xile

    RSS Feed

Powered by Create your own unique website with customizable templates.