Thursday, December 28, 2017 Update

Great news, again!  Right up there with some of the best news I’ve had since beginning this journey.  Writing this in our hotel room, a block from the most wonderful cancer institute in the world, Dana-Farber Cancer Institute.  Wonderful: inspiring delight, pleasure, or admiration; extremely good; marvelous.  Yes, wonderful! Regardless of the news I might receive from them, they certainly have inspired admiration from me, data shows their work is extremely good, and the people we’ve met there are delightful and quite marvelous in their treatment of patients and caregivers.

Back to my news!  Stable from the neck down, AND (drum roll please) an 84% reduction of the nasty beast in my brain meninges since beginning my second wonder drug Lorlatinib in July.

Today was another long day for us.  We stayed in Portland last night to make sure we would arrive at Dana-Farber for a 10:30 AM start.  At 10:30 PM the fire alarm went off in the hall of the motel last night.  Some kid had burned his popcorn in a microwave.  We didn’t have to go outside luckily. Today began with “free” breakfast at 6:00 AM, followed by a very quick 2.5 hour drive to Boston.  No morning traffic – unlike any other day we’ve gone.  Vacation I guess. We even parked on P4 instead of P6 of the underground parking garage!

My appointments were all the “usual”:  IV in, blood draw, CT scans of chest and abdomen on L1 in the Dana Building, brain MRI and IV out on Dana 3 , grab some lunch (Yawkey 3), check vitals, EKG, Dr. appointment (Yawkey 10), and wait for medication (Yawkey 2). Done at 4:00 PM. Nothing to it!

Here’s more great news – I am scheduled to return to Dana-Farber on March 1, 2018.  Nine weeks!!  Yes, nine.  That is the longest between appointments in the 23 months I’ve been a patient at Dana-Farber.  Wow! Now, will I be nervous about that? I don’t think so.  I know my body, and the difference between symptoms and side effects pretty well now.  And, my clinical trial nurse and oncologist are just a phone call or 5 hour drive away!

Hey, I forgot something very important in my post about Procedures and Tests !  When they put the contrast dye in your IV during scans, you get the warm feeling and would think that you wet yourself if not forewarned.  Thought about that one today when…

For me, 2017 has been the year I began to learn to LIVE with metastatic lung cancer, helping to create new statistics, and bring hope to those diagnosed with this disease that still currently kills 433 Americans every day. We can, are, and will continue to do so much better. There is great hope for the newly diagnosed.

Happy New Year to all our family and friends, new and  not so new!  Your positive thoughts, love, and prayers continue to help give me the strength needed for this journey.  Please test your home for radon this year if you’ve not yet done so.

Looking forward to us going home to the dachshunds and goats, comfy and cozy for the winter, feeling grateful, and finding joy in the everyday every day!

 

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