The latest news as of October 18, 2017

Well, since our devastating kick in the jaw last week…  not a lot has happened.  Unfortunately, Mass General did come back and get our hopes up (my hopes up again) with another targeted therapy trial that she thought ‘for sure’ would work for Tim even with his short bowel.  I was hanging my hat on it… and then she pulled the carpet out from under us on Monday by telling us “nope, that won’t work either due to his short bowel”.  There are some people in this world, in this industry, that would benefit from a better patient perspective type of communication style.  Nuff said there….

When we broke the news to Dr. Tejani, I must say, we crushed his heart as well.  He was beside himself upset with what had happened and the way it played out.  Since last week I have emailed three other Centers about Trials and have even gone back to MD Anderson to challenge the distribution of the medicines but unfortunately no luck with that.  And the other couple of trials I found, short bowel was part of the exclusion criteria and the other was in the Netherlands :-(

So there we sat…and sat…and sat…  then Monday evening, we shuddered with fear as we saw the disk of Tim’s CT Scan from Mass General sitting in our mailbox.  What story would this scan tell us?  Where are we headed?  You have NO IDEA of how badly I wanted to just throw it in the woods and “play stupid”…  just pretend that all was ‘okay’ and to believe that ignorance was bliss.  Funny…  even Tim, for being someone that HAS NEVER in his life liked to pretend at anything (other than pretending he was a fireman in his younger years when he wasn’t), even Tim said earlier this week that he was feeling good and just wanted to push it out of his mind and pretend…  yeah, Tim said that.  So, I took the disk and drove it to Wilmot and hand delivered it to Dr. Tejani yesterday morning.

So I awoke this morning to Tim’s sweet voice saying “Happy Birthday Denise”…  gosh, how I loved the sound of that.  This morning has been BEYOND ROUGH…  I have cried elephant sized tears all morning…  my eyes are swollen and they really hurt…  it has been a VERY emotional morning for me for a couple of different reasons that I really don’t need to get in to detail about.  But then….  then my phone dinged and I saw there was a message from Dr. Tejani…  OMG, that means he read the scan that I dropped off yesterday…  OMG, what will his message say?  Will he say, we need to meet in person right away…  Will he say, I’m so sorry but…  So do I open the message here, at home, by myself?  Do I wait and drive to Tim’s office and open it with him?  Do I call Tim on the phone and open it at the same time with him on the other end?  I stared at it so blankly…  with so much anxiety and pain coursing through my veins…  I was sweating…  I couldn’t believe how bad my hands were shaking.  Then I thought, “I’m already a sobbing mess, if it is bad news I’m not sure I can cry anymore…”  So I clicked on the link…  and there it was:  “Thanks for dropping off the CD yesterday.  I have reviewed and discussed with our radiologist.  GOOD NEWS:  NO change in tumor burden (lungs and abdomen) from August and no new spread!  Yeah!  I am relieved.”

I couldn’t wait to call Tim.  Ahhhhhh, we are relieved.  Tim had himself set up for a minimum of 10% increase in tumor burden and the devil was in my head telling me there would be new tumor spots.  Yes, this is only 2 months since the last scan, but we have had no treatment and were really scared.  We will take this good news and celebrate it today and find the good in the moment we are in.

The challenge upon us is to STILL find and decide on treatment VERY quickly.  Tejani’s words were:  “we still need to move forward with urgency to keep ahead of it”.  Tejani is out of town Thursday & Friday and told us if nothing new has surfaced/solidified by the end of day Friday, we need to start treatment with him next week.  Looks like we will start off with Irinotecan or Tramatemib.

Then just now as I am typing, MD Anderson (Houston, TX) called and said that Dr. Janku wanted us to consider a different trial.  It is an oral medication so I’ve asked them to specifically review Tim’s Operative Notes from July 2012 to ensure that the short bowel is not a concern.  She said she would research and get back to me tomorrow.  I’m not getting overly excited as this is a Phase I (first in human) Study which we are not jazzed about but not ruling it out until Tejani has reviewed it and given us his thoughts.

I am thankful for my birthday gift this morning from Dr. Tejani.  I think it is the best gift I could have hoped for.  Thank you all for your continued love and support.

I will update you at the beginning of next week once our start date and plan is solidified but hoping to start a day next week with treatment.

XOXO, Denise

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