Thursday, May 23, 2019


I know I promised my next blog would be about our trip to D.C., but I'm not feeling joyful enough to write about it.  In fact, it's been a while since I've felt very happy.  I've had headaches off and on since November.  They come and go and I currently don't have one.

These headaches can be debilitating.  And, of course when you're in pain, everything is worse.  I had a brain MRI which was clean.  Next month I'll be getting a CT scan of my sinus cavity to see if there is a clogged duct.

These reasons are not why I feel lost.  It feels like my life is slowly fading away.  People that once tried to help and cared don't anymore because I've been living with this disease for over 6 years.  Let me tell you, the longer you live, the harder it is, and the more support you need.  I'm telling this to the people in my life in through this blog because I'm too much of a wuss to say it to your face.

I see everyone carrying on without me, as if my existence meant nothing to them.  As if I didn't give birth to this amazing child and care for her through the very toughest parts of her life.  I was there for every surgery, every cold, up every night through every fever, every emergency room visit.  I took her to every doctor's appointment until she was about 7. 

I was there for the hardest parts and now that she's older, I feel like other people are stepping in as if I didn't do a thing.  I know this probably stems from my fear of leaving her and is all in my mind.  This is my blog and my outlet so I'm letting it out.Thankfully, she will never let anyone replace me as her mom. 

I'm so proud of the young lady she is becoming.  We had honor's night at her middle school for the last time.  Of course I cried, she's going to high school.  I've always felt it was the two of us forever.  I'm learning to let go, but I won't lie and say it doesn't hurt.  I hope she will always know how much I've loved her and will continue to do so and be here for her until the Lord calls me home.  I will always be with her though.

I guess I could've been given an easier life, but I wasn't.  So, real talk.  I am and will always be your mom Karley.  I carried you, gave birth to you, held you first, loved you first, and I always will.  No matter what comes along.  I loved you first, before you were even born.  One day, you'll grow up and have children of your own and understand just how great my love is for you. 

Wednesday, May 1, 2019

Bittersweet Hope

We just finished our annual trip to the ILCSC 2019 (formerly LUNGevity Hope Summit).  It's always so amazing to see people that are like me, fighting the same disease and striving to learn what they can.  I think the most important thing I take away from each of these events is Hope and Support. 

It just feels so amazing being around by people who truly care about you and you them.  We are a huge family.  I never wanted to be in this family, but they sucked me in and I wouldn't trade any of them for the world.

In life, tomorrow is never promised.  As Emily Dickinson says, "Forever is Composed of Nows".  So, quit putting off tomorrow what you want to do today.  Tell that person you love them.  Eat the cake! 

I'm splitting this weekend into two parts.  This blog is all about the Summit and my next will be touring D.C. with Josh.  I didn't see him much, which is pretty amusing.  I think cancer is sad for him, but he's dealing.  Since things with me are going well, he's not so worried and more like a kid in a candy store looking at sites.

So during the conference, I was on a panel with Dr. Dan Cadigan, who is also a stage 4 Lung Cancer Survivor.  We are going on about the same amount of years and took different questions from the new-coming group of attendees.  I think I may have had a little much to drink the night before, you can tell by my face in the picture Cliff Norton so kindly took.  I promise I wasn't sleeping Dan....I did that about 3 hours later.  I had to get that nap in.

Friday night is always my favorite night.  I love being able to socialize with guests and physicians and staff.   I'm super happy Dr. Flores, Chairman for the Department of Thoracic Surgery At Mt. Sinai Hospital in New York, made it.  He's just amazing. 

Additionally, I met Dr. Drew Moghanaki, from Emory's Winship Cancer Institute, internationally recognized board certified Radiation Oncologist specializing in the area of lung and prostate cancer.  Such an outstanding guy as well. 

These physicians really care about their patients and I feel so blessed to know them.  And of course our fearless speaker Chris Draft from Team Draft.  How I love that man!

I'm thankful Andrea, Katie, and the LUNGevity staff continue to do these life changing events each year and I've been able to go.  I've met some incredible friends, including my soul sister in person during these.  Unfortunately Kelly Shannon couldn't make it last year and went home last July.  Hence the name of my blog. 

I don't know how the doctors do it.  I become so close to some people that sometimes it rips me up inside when they leave us.  When I go to the once shared event and am having a great time, I get this gut wrenching feeling of guilt that they are no longer with us.  But I'm sure she is living it up in Heaven, waiting for new snapchat filters.

I miss Nicole Russell too.  It wasn't until I surpassed 5 years that the amount of people that die from this disease really started to get to me mentally.  I'm on antidepressants and yes I exercise and get out, but there are some things that can't be fixed.  I can't bring back the countless friends I've lost to cancer over the years.  I can't bring back my soul sister.  Each time, one of them takes a little piece of my heart.  So yes, my heart is full of scars but also full of love.  As Terry Karlsdad told me, "sadly there will be more.  But I have to put on my cowboy boots and grab the strap and pull them high and continue to fight in their memory".   

He also explained how the hurt of missing her will never go away, but with each milestone I hit I can say "because of Kelly I made it here.  She is the reason I'm marching on.  So this disease will no longer be able to steal my friends."  Terry Karlstad, you inspire me in so many ways.  You, Cliff, Jill Tracey, Don, Linnea, Janet, Juanita, Tori, Lisa, Lysa, Jim, Terry Gillespie (she earned the name bitch this year)...and so many more.  You guys don't give up, even when the going gets tough. 

I admit, I do get down after these weekends because I head back to the real world where I feel alone in my local community and sometimes feel like online friends are the ones that understand.  And for every person I've lost, I've made new friends, like Stephanie and Samantha this year.  And Kelly Kayuk...girl, I feel we've been through so much together. 

Anyway, I know I would be here all day if I expressed independently how much each of these people in the huge photo below mean to me and what the light they've brought to my life.  If I didn't mention you, I'm sorry, I've rambled too much and have pic overload coming up. 

But, I will end with this.  I will always and forever keep my faith in God's Plan for my life.  It may not be what I want at the time, but it has been the best for me.  I praise Him for keeping me alive to not only share my story in words but in pictures, beautiful memories that will last forever even when we all go on.  Karley will have something to look back on and remember her mother, how much she loves and fights for her.

Thank you for all of your continuous prayers for my family, friends and me.  And remember, tell that person you love them while you can, tomorrow isn't promised.  God Bless.  And get ready for pic overload.....