December 2016

What can I say – I knew I was going to be terrible at this!  I’m going to go back up a bit and update on how things have been.

Our return from California went well – the kids were a little bit sad but life for them returned to normal very quickly.  Same for me too – I went back to work and things were good for a few months.  The new diet was going well, I lost almost 40 pounds and was feeling quite comfortable with what I could eat.  I was able to go out in public and make the choices that worked best for me! Life goes on, as it normally does, until the pain returned in my back in late may.  We did another PET scan which showed some progression of the cancer in my spine and decided to start chemo again.  Unfortunately my white count dropped pretty quickly and I got a sinus infection.  Not a good combination, as I ended up in the hospital with no white cells and a fever.  No fun!

Fast forward to the summer – chemo continued – PET scan kept showing progression (obviously something is not working!)  – Vacation with the family was wonderful – great memories were made!

I went back to school (work) for a little while but with my white count still so low and the threat of germs increasing I decided (along with my doctor) that it would be best to stop going for a while.  A very sad decision for me but with the threat of ending up in the hospital again it was an easy one to make.

October – PET scan showed small spots in my lungs (I would insert a sad face if I knew how)  we could start new chemo but we are sort of running out of options.  My Doctor has reached out to Sloan Memorial in NYC.  I met a fantastic Doctor there that found a perfect trial for me.  The only problem was that it is run out of Dana Farber in Boston.  We are becoming quite the travelers!  After many, many phone calls and multiple visits to Boston I was finally told that I was accepted into the trial.  It was an incredible challenge to my patience as they were so laid back but I finally had the trial medication in hand and heard the words out loud “you’re accepted”!!! Wow, what a relief!  Now – the medication is in pill form so I am able to take it at home but we still have to visit the Dr in Boston once a week for seven more weeks and then repeat all the testing and see how we are doing!

For now we are going to enjoy the time we have together – celebrate the magic of the season and make some great memories!!

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