My sweet angel

My sweet angel

Thursday, February 4, 2016

World Cancer Day - The Silver Lining

Today is World Cancer Day.....

Well, I'm on my way into year 4 as a member of this club.  Let me say, I thank God for that.  I've been blessed to have tarceva still working on my lung cancer and for the many docs who have fought for my treatment.

The cancer club is not the club you want a membership card too.  Although, I do have an actual physical cancer card...I try to make light of something so horrible.  I think it scares some people or puts some at ease.  I'm not sure, I'm not sure I care either.  It puts me at ease.

Though cancer SUCKS, there are two silver linings.

1.  The appreciation of life.

I'm like, "ok God, maybe we went overboard on opening my eyes" sometimes when I think about it.  But I was not appreciating life and the beauty that surrounds me.  I was a workaholic.  I never stopped to "smell the roses".  I used to just walk right past them, not even noticing.  Now, I cherish the sunset over the ocean.  During the summer, I love to go to the beach every weekend and just breathe it in.  The smell, the sounds, the children playing, the life.  (I know mom and docs, not supposed to be in the sun, I take an umbrella, my tan is just from the walk).  I love my daughter so much, I get a little over protective and let her get away with a little too much.(that's a drawback but when I think of her suffering, I can't help it).

2.  The friends I've made or have grown closer to.

I have made some wonderful friends (cancer patients and caregivers) I may not have otherwise known existed had I not joined this club.  I can't name them all in the lung cancer community but I'll try: Shermaine Lee, Rico Lee,  Paul Kalanithi, Lucy Kalanithi, Chris Draft, Lisa Goldman, Tori Tomalia, Arash Golbon, Molly Golbon, Dan and Rebecca Powell, Kelly Kayuk, Janet Freeman Daily, Debbie Pouncey McGettigan, Karla Southerland, Karen Parks Odell, Katie Dewey-Brown, Jill Feldman, Emily Bennett Taylor, Bonnie Addario, Corey Wood, Kimberly Stratham Ringen, Courtney Kyte, Don Stranathan, Craig Blower, Deana Hendrickson, Betsy Thompson, Denise Cutlip, Linnea Olson, Anita Figueras, Dann Wonser, Kristen Carlton, Roz York Brodsky, Lynn Jakobowski, Dusty Donaldson, Kelly Shannon, Matt Ellefson, Deb Bauer, Peggy Fogarty, Melissa Crouse, Lysa Buonanno, Mr. and Mrs. Stoner, Cliff Norton, "Good Morning" Jon- my first friend in the LC Community.... ok....I can't remember all the names, but look at this list!  These are just through the lung cancer community.  All of these people have made such an impact on my life through their stories of hope and some have really hit home when passing away from this awful disease, I'm not immortal.  My time will come, as will all of ours.  I just hope to follow in the massive footsteps they left behind.

I've also become closer to some that have/had other cancers and their caregivers: Gretchen and Matt Anderson, Carmen Frye, Roy Reynolds (better take those pills), Marjorie Polk, Maddie Briscoe, Ansley Jones, Chris, Cassie, and Chaseman, Brad and Barbara Graves, Cheri Burgner, Dylan Rosier and sweet Alexa and Katie.  We all have had different cancers, but we are all a member of the same club.  The club no one wants to join.  The club that should really no longer be in existence right now!  Once again, some are gone.  But there is a bond we all share, regardless of the type of cancer we have or had.  Cancer is on track to take over heart disease as the nation's leading cause of death.

So, in honor of World Cancer Day, just let me say it's been such a humbling experience and if I could change things, I'm not sure I would.  Collectively, these people and this cancer have made me who I am today.  This experience brought me closer to God, my family closer to God, and without it, I doubt I would be getting married next month because I would still be on the third floor of that condo and would not have met Brent.  God has a plan for all of us.  I am so happy, regardless of everything, with my life, in this very moment.  My life has been a good one and I have been so blessed.  I may sleep more, my hair kinda sucks, and I'm not as financially well off...but those things don't matter.  What matters is the fact I'm around the people I love and I could not ask for more, except maybe a cure now.  Like I said, I wouldn't change things thus far.  But going forward, a cure or long term treatment (like decades and decades worth) would be amazing, for all cancers!

My eyes are open now.  I was blind but now I see.  And I will continue to keep my faith.  Happy World Cancer Day (not sure it's appropriate to say that but wasn't sure what to say...) and to those who have left us, know you have never left our hearts.  Until we meet again, know we love you and we hope you're listening when we talk to you sometimes.

Thank you all for your continuous prayers and support.  They mean the world to my family, friends, and me. about that cure?

UPDATE:  When reviewing my traffic sources, someone googled, "Dr. Paul Kalanithi cause of lung cancer" to get to my blog.  Let me just go ahead and answer that for them.  ANYONE with lungs can get lung cancer.  Sometimes the cause is unknown.  So look for a cause all you will not find anything but the EGFR mutation.  #education

Also, my grammar nazi sister told me I had a bunch of mistakes in here.  I tried to correct most of them.  But, it's hard to write after the ambien dose. Thanks Brooke!

Tuesday, January 19, 2016

An Open Letter to the First Year Late Stage Cancer Patients

Dear Fellow Traveler,

I would like to say welcome, but under the circumstances, it isn't appropriate. So, I'll go with "hi and I'm sorry you're here now."  When it comes to being diagnosed with late stage cancer (stage 4), a compilation of crazy emotions overpower your natural thinking process.  They can range from "oh, I'm going to beat this, it's just a bump in the road" to "let's get my affairs in order, I'm a goner".

Of course, all of these are natural.  The community will rally around you, especially if you're young.  Friends you didn't know you had will come out of the woodworks, posting memories on social media and helping support you anyway possible.  I think it's human nature to want to help.  The younger patients will be bombarded with interview requests and suddenly you're in this spotlight...I mean people know who you are from all over!

You feel so loved and supported that you can't imagine that ever going away.  Not all of these people. Not all of this attention.  But then, you keep living and people begin to feel you're better, home free, "she beat cancer".  You keep beating that prognosis you were originally given and you slowly fade away into a state of limbo.  Not fully living, but not yet dead.  Because you know the eventual outcome, whether it be a year to 20 years.  You know, others may not, but you do know.  You have good days where you want to advocate and take on the world, and you have bad days where you don't want to get out of bed and only want your cats at your pity party you're throwing for yourself.   Believe me, I've been there.  I think this cancer makes us somewhat bipolar.  It's a roller coaster for sure.

The media interviews start to fade as fresh faces of the First Year Late Stage Cancer Patient arrive and you feel no longer useful to your cause.  But you are.  You always will be useful.  You are showing that you are not giving up, you are not backing down, you're not only surviving, but you are LIVING.  After the first year you understand what's important.  You take more breaks from advocating to spend time with your family.  You day there is going to be an end to your earthly body.  So, for now, you LIVE and you show everyone you are LIVING!  We all have this one life.

So, when the cameras fade and you get sad because everyone thinks you're done with cancer but you know you'll never be done, remember this:  You are alive for a reason.  So, don't give up.  Reach out to others, help bring hope.  Share your story so when the newly diagnosed patient is sitting at MD Anderson, continuously crying, and you say "I've been living with stage 4 lung cancer for 15 years", you give them hope, something the person without cancer can't always understand.  1 Corinthians 13:13, "And now these three remain; faith, hope, and love.  But the greatest of these is love".  You can help someone achieve all of those things with your inspiring story.

And please vote for me every day through January 21st if you have the time.  It would mean so much and  I can reach so many people by just staying in the top 10.  Just scroll down to "keeping my faith".  You can vote on twitter and facebook every 24 hours.

Finally, thank you for all of your continuous support and prayers for my family, friends and me.  The fact that you're taking the time to read this just fills me with joy beyond belief.  And to those who have gone ahead, I'm sure I'll see you again and know that you are loved and never forgotten.

Here are some pics from us LIVING!

Tuesday, January 5, 2016

Live Like You Are Dying

Tim McGraw knew what he was doing when he wrote that song.  It's something we should all do.  If you've never heard it, I encourage you to do so.  I guess the majority of our population do not think about things like this because they've never had that moment.  That one moment.  That moment when time stops and you realize, this could be it, this could be the real end.  What in the world have I been doing with my life?  Working?  Stressing?

The thing is, there is so much I want to do and experience while I am able and feel good enough to do it.  I've seen so many of my lung cancer friends decline, quite frankly, in all honesty, this girl is scared.  Everyone tells me, "you're going to be fine" and "you're doing great" and "you're going to beat this".  I appreciate the sentiments, I really do.  It's just that, I don't think any of us can really know.   Only God knows that.  I know I'll be fine, but I don't know I'll beat it.  There are two places I can be fine.  I will be fine no matter what happens.

So, my dilemma right now is not which medical trial to enroll in or what medication to take.  My dilemma is to do what I want to accomplish before I'm put in a wheelchair, in the hospital or on an oxygen tank.  I want to go places and see things.  I want to ride in one of those airplanes that actually give you a bed (Delta) and go to Europe.  I want to see the Louvre in Paris, take a boat tour in Venice, see Buckingham Palace in London and try to make a guard laugh.

I know it sounds so silly.  I should be worried about staying alive and researching and how each scan will turn out.  But quite frankly my dear, I don't give a damn right now.  I want to do so much, but it's all "just in case".  I don't want to be so sick I can't enjoy my bucket list.  By then, I won't even feel like doing it.

I have had a wonderful life so far, I can't complain.  I've been many place and experienced many things.  So, if none of those bucket list items come true, I'll be okay.  As long as I have my family.  We can just go to Vegas and probably do all of those things AND see some pyramids AND Elvis.  

This living in limbo just sucks.  It sucks so bad.  I feel bad complaining because of all of the friends I have that are worse off, but I couldn't sleep so decided to just come on out with it.  So, there it is.  I want a bed on a plane!

In other news, we head to Chicago in a few weeks because the girls came in the top ten in their NASKA divisions (karate) so will receive rewards for both sparring and kata.  So proud of them both.  They will also compete while there.  So please pray for them to return home unharmed.  It's the beginning of competition season.

I am finally getting my wedding stuff together.  I feel like such a slacker.  I wish I could invite everyone, but we are on such a tight budget due to medical bills and me not working and having two girls on a traveling competition team.  So, please don't be offended if you don't get an invite, I want you all there!  We just can't afford it all.

Thank you all for your continuous prayers for me and my friends and family.  Congratulations Kimberly for winning Team Draft's Super Bowl Challenge!  I'm so happy for you!  And to the runners up, you guys will have a blast!  That was one of the best highlights of 2015 for me and I met some wonderful lifelong friends.  And Chris Draft isn't so bad himself.   Kidding...he's amazing.

I never thought I would live to see this year, so most of all, thank you God for getting me here.  I'm not losing my faith, I'm planning my life with your guidance.   God bless you all!

One more thing, you can vote for my blog on this site

It would be amazing to see a lung cancer patient in the top ten!  I'm currently #6.  You can vote every 24 hours through facebook AND twitter.  So, please help keep this blog there....or you can get me a ride in one of those planes with the beds to Europe.  Your choice.

Kidding again!  Happy New Year and thank you for continuing to read my blogs.  It's a roller coaster...but it's worth the ride.  Here are some recent pics of Christmas and our Karate Kids.