Tuesday, May 10, 2016

CT Scans #11 and a New Attitude

     It has now been three years and five months since I was diagnosed with stage 4 adenocarcinoma of the lung.  It has been three years and two months that I have been taking Xalkori, the oral chemotherapeutic agent that has kept me around this long.  I was taking Xalkori for three years prior to it being FDA approved for ROS1 mutation driven lung cancer.  On March 11, 2016, Xalkori was approved - which doesn't change much for me, but will make the medication more accessible to those whose insurance companies denied coverage for it because it wasn't approved.  

http://www.businesswire.com/news/home/20160311005839/en/XALKORI%C2%AE-crizotinib-Approved-U.S.-FDA-Treatment-Patients

California poppies...one of my favorites.
     The clinical trial for Xalkori use with ROS1-mutation driven lung cancer found, that for patients like me, the median "duration of response", (the time the medication worked before it stopped working), is 18.3 months. I had CT scans last Friday - and the good news continues...Xalkori is still keeping my cancer stable.  I sure as hell don't know why I am so lucky, but I've exceeded the median response duration by 200%, and I'm going for more.  
   
     More than being happy about my most recent CT scans, I am relieved.  Living with stage 4 cancer has left me living my life tentatively.  Dictionary.com  has the following definition for "tentative":
 


adjective
1.   of the nature of or made or done as a trial, experiment, or attempt; experimental:
a tentative report on her findings.
2.   unsure; uncertain; not definite or positive; hesitant:
a tentative smile on his face.

Moonlight Beach, California
     Both above definitions apply to how I feel. I suppose everyone's life is a trial, but when I didn't know I had cancer, I didn't think much about the gestalt of my life...I just lived.  I now, most definitely, feel like I'm living within an experiment. And...without a doubt, I am unsure, uncertain, not definite and hesitant about what lies ahead of me.  
     I hate this uncertainty.  It chips away at my self-confidence.  It makes me wonder which life milestones I will be around to celebrate with Wynn and my children, and which ones I will miss.  It takes away the courage I used to mustered that allowed me to take on new life adventures. 
Nathan got up on his board the first day!


     I realize what I need is a new attitude.  Xalkori has given me much more time than I ever thought I'd have.  As always, I should not overlook any opportunities, including this second chance to try new things. There is still uncertainty about what lies ahead of me, but I'm going to try to get out from behind this 'tentative living' crap, and look into some new adventure possibilities.  I have no idea what that will look like, but I'll keep you posted. 

Wish me luck!

(I wonder if I should have tried surfing?)



 

6 comments:

Jenny Puntenney said...

You are so brave and inspiring, Luna. I can't imagine the courage it takes everyday to face the day with positivity and a smile. I pray for uncountable years of health for you to be as adventurous as you dare to be. Lots of love from KS!

Jenny

Stacy Pettit said...

How about synchronized dancing? I just heard of a study that showed great benefits and happiness from dancing with others - perhaps it goes back to ancient group dance,rituals. Anyway it seems like a better idea than surfing! Hugs

dearmaizie said...

Too bad there aren't "Like" buttons on Blogger blogs.

Go get 'em, Luna, with your new attitude!

p.s. That picture on the beach is awesome.

Lisa said...

Thank you for your wonderful blog. I have the same diagnosis as you only the RET mutation since Feb 2015.

Ryan said...

Hi Luna! I noticed your blog and I greatly appreciate the stories you are willing to share with others. My name is Ryan and I’m currently a student at Calvin College in Grand Rapids, MI working on a project called CancerEd. My team and I are developing curriculum materials to teach children about cancer in an interactive but scientifically accurate way. We are looking to send out a survey to parents who have had cancer to better understand how they communicate with their children about cancer and we would love your help with this! If you could email me at rdt5@students.calvin.edu, I would love to give you more information about the survey and about our project. Hope to hear from you soon! Thanks!

Mesothelioma Cure said...

You are so brave and inspiring, Luna. I can't imagine the courage it takes everyday to face the day with positivity and a smile. I pray for uncountable years of health for you to be as adventurous as you dare to be. Lots of love from KS!
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