Processing some bad news today

     The Huntsman Cancer Institute in Salt Lake City is beautiful.  It has a gorgeous front entry.  Valet parking with friendly guys who recognize our faces.  The helpful front desk  knows our names, as does the sweet lady in the gift shop and older man in the Bistro who always tries to give my youngest daughter a cookie.  The art work along the hallways is impressive.  There is a person who travels from one waiting room to another with a cart of drinks and snacks that she serves for free and asks you how you are doing.  The walls of windows provide an impressive 180 degree view of the Salt Lake valley.  All that being said, we hate going there.  There is always a physical, negative reaction as we pull our car to it's front entrance.  Today was no different.

     Did you know that there are several different types of chemo?  I didn't know that when we began this journey.  Each type of cancer uses the chemo regiment that has the best track record for that situation.   Sarcoma, in general, has a reputation for being resilient to chemo treatments.  There are three chemo regiments that have worked to slow down, and possibly shrink sarcoma tumors.  We were told how challenging chemo treatments are for the patient.  We were told that even when chemo appears to be working, at some point the cancer learns how to resist it and the chemo would eventually become ineffective.  There were several things for us to consider about which chemo to use, dosage, managing not just the symptoms of cancer, but the side-effects of chemo, and how to create a strategic game plan for treatments.

      Chemo treatment is like a game of chess.  The two players being Mark and his cancer.  Mark takes the chemo then we watch for two things; 1. Is the chemo effectively helping?  and 2. How is Mark's body tolerating this chemo?  Then after a few weeks we do a CT scan to see how the tumors are, and evaluate how Mark is tolerating, then plan our next move.  We do this over, and over, and over.

     We began chemo treatments in September 2011.  Mark has completed 14 rounds so far.  We made a choice to begin with the chemo called Amrubicin, and it turned out to be the correct first choice.  It 'bought' us 6 months.  We did 10 rounds of treatments, with not-severe side effects.  Mark still had his gorgeous head of hair, which other chemo patients in the Infusion Center were quick to point out.  When the scans made it clear that the tumors were growing again, we switched to a chemo regiment of Taxotere with Gemcytabine (Gem/Tax) for two rounds.  Mark lost his hair and was very sick.  The first follow-up scan revealed the tumors were growing.  We immediately stopped that treatment.  Our third option is the "gold standard" of Sarcoma chemo treatments.  We were preparing to begin with a regiment of Doxorubicin with Ifosomide, when something new came along.

     The timing on this clinical trial was amazing.  Mark fit the criteria perfectly and a team here and back east rushed around to get Mark started asap.  Mark became the 4th person in the nation to be able to take advantage of this treatment.  Our oncologist was excited, and our oncologist doesn't get excited! 
We had even seen a news clip about this treatment that my Dad had come across.  The doctors in the story were raving that this might be the cure for cancer.  It lifted our hopes!!  This clinical trial is called MDM2 Inhibitor, I studied everything I could get my hands on.  All you need to know is that it looked very promising!  On July 5th we began this clinical trial.  Due to many follow-up scans we had to travel to Salt Lake a lot.  It was very obvious that Mark's body didn't like this treatment.  He was so sick.  Managing the side-effects became our full-time job and we were very discouraged.  Mark completed two full rounds, fighting through the bad days and determined to continue with this treatment. 

      This brings us to today.  This was the first CT scan to check and see how cancer had played it's turn during this chess move.  What we needed to hear was that the tumors were stable or even shrinking, so that we could take advantage of several more rounds of this exciting new chemo regiment of MDM2 with Doxorubicin.  That is not what we heard today.

     All of the tumors appear to be growing.  Not fast-growing, but when they grow through treatment, then that treatment is considered ineffective.  Not only that, but a new tumor was discovered.  This makes 15 tumors in total, located in his hip, leg, and in his left and right lungs. Without even a discussion, Mark was pulled from the clinical trial. 

     At this point Mark reached over and took my hand.  We know that in that moment a big piece of hope was taken from us. 

     We are taking a break this week before our next chess move.  The plan is to try the other chemo that is considered the gold standard of treatment, since we already tried the Doxorubicin, now we'll try the Ifosomide. They are usually given together, but it is possible to do them separately like this.   It requires a 5 day stay in the hospital.  We'll need to arrange our lives to accomodate that.

    This process is draining on our family in every single way, and it just doesn't get any easier.  The only positive thing about today was that between scans and our meeting we had time to go on a date, just the two of us.  We ate frozen yogurt at TCBY then went to the dollar movies to see Madagascar 3, which made us laugh and laught.  Chris Rock singing; "polka dot, polka dot, polka dot.....afro"  is still stuck in my head.

    Thank you for checking in with us.  Thank you for the prayers, positive thoughts, hugs, and love.  We love you too.