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

My return to the blogging world

I attended the LUNGevity Hope Summit this past weekend and all of the HOPE and Survivorship opened my eyes to how wonderful this community of Lung Cancer Survivors, Caregivers, Doctor's and Advocates really is.  Thus, I decided to bring back my blog! I had stopped it last summer as it was just too early for me personally. I was still adjusting to my targeted therapy pill, emotionally I still was all over the place so whenever I would write, it would just make me cry and stir up so many emotions that I was no ready for.  So here is Round 2

I am now 14 months in on my targeted therapy called Tarceva! I still despise some of the side effects, but in the end, it's a love/hate relationship that I have no problem dealing with for years and years to come as that is my goal! The median age of this drug working before resistance begins is about 12 months, well I have past that median age, however I have my scans on Tuesday May 9th! So the scanxiety is beginning to settle in but much later then all of my other scans. If you ask my husband or daughter how I have been the entire month prior to scans, they both will say um, well, a little witchy....yeah, witchy with a "B"! So if everyone can say a little prayer the night before or the morning of, my family and I would really appreciate it! Scans are the worst, the scanxiety is even worse, but thankfully, I get my results 2 hours after the scans and don' have to wait days for the results.

This blog could turn into a book if I tried to catch up on all that has gone on since last August, so the short version is, kicking cancer's ass, while having fun in LA, NYC, Myrtle Beach, birthday celebrations, holidays,  dealing with side effects, and enjoying time with each other. Living Life Now instead of later! That has really become my mantra lately, LIVE LIFE NOW. So many people put their jobs in front of their marriages, their kids, everything else in their life. What happens when you simply run out of time for no planned reason? Then you never got to enjoy what life is really about, to me, MOMENTS. Moments with my family, my loved ones, my dearest friends....that is what life is about.  

The LUNGevity Hope Summit was an amazing place for all of us Survivors to get together to bond and get information about our disease.  It felt like a huge reunion! I talk to so many Survivors online through Facebook groups that I didn't realize how many it actually was until I saw all of them this past weekend.  For a first timer, I was mentally and physically exhausted at the end.  I appreciated everything that was planned and how it was executed, but talking cancer for 3 days straight definitely took a toll on me mentally.  Of course the thought of scans coming up didn't exactly help it either.  

I think what became more apparent to me during this weekend is that I must be missing something when it comes to how and why we have all of these different Lung Cancer Organizations basically spending their own separate money on their own versions of the same things.  We know that Lung Cancer is incredibly underfunded, so why do we have many of the same things such as a New Patient Guide or an online database to collect data from patience.  Obviously I am still new to this advocacy part but wouldn't it make sense to pool all of the money together and fund one single Guide or one single online data collection point? We all have this horrible disease, all we as Survivors want, is for the research to keep going, hopefully faster then ever and that the world is educated about our disease properly.  I fail to understand why there is this great divide between most of the Lung Cancer foundations.  Why can't we all just get along and do it together so that we can speed up the process as a whole? Every organization is working hard for our cause, imagine how much we could get done together?

Thanks for reading...this was a lot easier then last year, and I hope to touch on many different issues in the future, I refuse for this just to be based on my health and what goes on in my life! 

LIVE LIFE NOW!
xoxo
Nicole