I know it’s been 3 months since I posted an update!  We’ve been going to Boston once a week since December with the exception of 2 times.  It looks like that will be our schedule.  The cycle of taking the drug is 3 weeks, so we won’t have to go to Boston on week #2.  Ray will see if they will allow me to have blood work done at Harry Gray on week #3 and sent to Mass General.  We should find out about that within the next week.

Anyway, I’ve had two scans since last writing and both have been stable.  The one I had March 1st had shrinkage in the lung nodules.  The scan I had last week showed shrinkage of 2 of the 3 tumors in my liver!  When we went to my appointment yesterday I asked to see the scans and it was nice to see that the tumors are so much smaller than when we began this journey almost 2 years ago.  Another exciting thing is that my liver is also shrinking–this is a GOOD thing!  It means that the inflammation is going down and the drug is working!

The large tumor, that was 6 inches when diagnosed 2 years ago, is now 3.5 x 2.2 inches.  This tumor was 3.75 x 3 inches on previous scan.  Another tumor in my left lobe was 1.93 x 1.9 inches on previous scan, is now 1.73 x 1.73 inches.

New sweatshirt. Bile Duct Cancer Messed With the Wrong Woman!

I have to watch my phosphate levels on this drug.  I think I’ve got it down pretty good now.  I can’t have any fish because it’s way too high.  I can have tuna fish and shrimp though.  I could have one piece of pizza, but I’d rather go without.  If I stick to one serving (1/2 cup) of vanilla ice cream, it’s high for a snack, but I can do it.  Haven’t done it yet though.

A lot of our time has been spent with our beautiful Clemmy!!!  She lights up my life!  I’m so in love.  And, of course, so is Ray.  Heather calls him the baby whisperer!  She is growing day by day and is a bundle of joy.  She’s full of energy and likes to be moving around even though she’s not able to crawl yet!  She likes to stand up and sit down in my lap and smiles all proud of herself.  She tells a good story too!  And we’ve gotten a few laughs out of her too.  Can’t believe she’s just about 4 months old already.  We are so fortunate that Jason and Heather live nearby.  Jason picks Clemmy up from daycare and stops by for about 1/2 hour several days a week and we’ve babysat numerous times and have had for entire day’s also!!!  Loving every minute of it!

We’re hopeful this drug can do some damage for a while.  Downside is that I do have fatigue.  If I do anything around the house, it exhausts me beyond what is very hard to describe.  It does aggravate me, as I like to be doing something.  For the most part I’m conserving my energy for visits with Clemmy and social events.  My mouth also is sensitive to certain tastes and gets dry.  I’ve got some things to help with that.  Important thing is that I continue to not have any pain.  I’m hoping to do an update in a few weeks when I hit the 2 year mark.  I’m enjoying proving that first doctor wrong!!!!

Just out of the bath!

Yes she is the coolest girl ever!

Asleep in swing at Nana & DeDa’s.

Hanging out with Mommy.