Friday, July 28, 2017

Hello There!

Life sure does get hectic doesn't it? I returned blogging on May 1, 2017 and swore I would update at least monthly, well here we are July 28, 2017... well I'm back again!  I took a "lung cancer" break in June, I experienced severe toxicity and some progression on my 1st targeted therapy and even after increasing my dosage, although my follow up scans were stable, the toxicity was really taking a toll on me and my Oncologist did not want to continue on Tarceva.  Good news is, that I am on another targeted therapy, Tagrisso and boy it is a whole different world! I feel great, the side effects are not as bad and I am loving life!

I mention I took a "lung cancer" break, there are many reasons behind this...progression as we call it is when your cancer is starting to grow again.  I thought I would deal with it better then I actually did, it was pretty hard on me mentally.  I am usually very active and involved in our Lung Cancer community sharing our stories, side effects, treatments etc.  This time, I needed to deal with it alone. My Oncologist was more worried about the toxicity then she was my progression and I trust her 100%. Although I was not happy at all about moving on to my 2nd line of treatment, I am grateful that there is one and that it is as wonderful as it is.

This week I have been focusing on getting back in the Lung Cancer game - Advocacy is so important in our community because of all the stigmas related to our disease and how underfunded our disease is, I know that whatever I can do to help, I want to do! I am coming back full force and am ready to do whatever it takes to help ensure that research and funding continues and gets better everyday!



Before my "break" I got to take part in the World Precision Medicine Conference held at Duke in May.  I was there as the Patient Voice and it had such a great impact on me.  I got to tell my story in front of the researchers, oncologists, investors, some pretty important people and it felt amazing.  I truly felt like hearing my story was vital in understanding how important research is to us as Survivors.  I hope to be able to share my story much more!

Tomorrow, we leave for Kill Devil Hills for our 1st ever Family Reunion!!! It all began at our party Jon and I held last June. It was an Anniversary/Celebration of Life party that a lot of my family members attended and it really made us realize that we needed to get everyone together.  So we began planning and now a year later, it is finally here and I cannot wait.  I get to see family that I haven't seen in over a decade!



Jon and I went to Puerto Vallarta last week for a Honeymoon Re-do.  Our first honeymoon last June was an emotional disaster. I was 3 months in on my targeted therapy, rash was everywhere, mentally I was a wreck and I was losing my hair.  So we decided to try it again and it was so worth it.  We had such a great time and was such a memorable one.  We vowed to go back to Puerto Vallarta with the kids as we fell in love with the town and the people.  While we were in Mexico, the kids had the opportunity to go to a week long overnight camp for free near Greensboro, NC.  It was called Camp Carefree and boy did they love it!  I was nervous as they had never been there before but put it this way, Kaela was crying when she got picked up because she didn't want to leave and Brandon said he had a better time at camp then he did on his most recent cruise to the Carribean.  I can't thank the folks at Camp Carefree for all that they do! Our kids want to go back next summer!




I am no longer working, I have been approved for SSDI and I have put in my Disability Retirement packet.  The fatigue and side effects were just too much for my body to handle.  So now I get to relax and rest when I need to without feeling pressured to work.  I think going back to work after diagnosis was initially the right thing to do as it made me feel semi normal again, but after a year, I can feel my body screaming at me to slow down and my Oncologist agreed.  I get to sleep in, take Kaela to school, volunteer, advocate and be a stay at home mom, something I always wanted to do, just didn't think it would be for this reason.  But that my friends, is my silver lining!

2017 hasn't exactly been great for the Lung Cancer Community, we have lost some great Survivors this year, and it has definitely affected me mentally.  I always think, wow, things can literally change day by day.  It's a scary realization but it's very real. I think I have almost fully accepted my mortality.  Weird and pretty grim to type that but I am almost to the point of acceptance. We are all going to die one day and we all don't know when that day is, so I am getting everything in order. But in the meantime, I am living life to the fullest.  Looking back on my life, I definitely didn't take advantage of all that life has to offer before, but you can bet that I am now. I am living life by my new motto:
LIFE LIFE NOW! Tomorrow isn't promised for anyone folks, so whatever you want to do, do it NOW!

 This is a short blog, but will update when we return next week I promise! But for now, I have to go have some fun with my family!!!

LIFE LIFE NOW
xoxo
Nicole