My sweet angel

My sweet angel

Monday, August 25, 2014

Living With It

I just want to blog today about what it's like to live with the big C...for those who don't know.  I know I'm one of the lucky ones that gets to take the daily pill, but it's forever.   Forever will I have to pay attention to what I eat, when I eat it, and when I take this daily reminder that I have cancer.

Now, to some this is a walk in the park.  I know so many people have it so much worse.  But, there is something we all do have in common, we walk within two worlds.  One of life and one of death.  It can go either way and we have to accept that.

I've been making a mental list of things that I've developed an absolute enmity for...and I've decided to put them down to share.  Everyone is different, but if you're my friend, here is how I feel.

1.  Please don't tell me everything will be okay.  Because the only one that really knows if everything will be okay is God.  I have Stage 4 NSCLC.  The 5 year survival rate is very low.  I understand that cancer breakthroughs are happening every day. Most days I believe everything will be okay.  But, some days, I just want to lay around and watch the ID channel so I can feel better about my "maybe" untimely demise.  Because, the people on that channel have it worse than me.  At least I get to make things as right as possible in my life, which is a very sick way to think...but I thank God for not going out the way some of those people do.  I feel bad for them!

2.  Please don't tell me the cure is to be positive.  Attitude is NOT everything.  This way of thinking makes those that are truly dying feel as if it is their own fault.  They weren't "positive" enough.   Someone commented on my blog about this earlier, I loved their rant.  I've known plenty of people who truly believed they would beat this, and they didn't.  Just say, "This sucks" and leave it at that.  Because, in reality, it does suck.  I'm all about being positive, but there is a big difference between living in a positive la la land and reality.  It's important to be realistic too.

3.  Please don't say "My friend beat Breast Cancer, if they can do it, so can you."  Not sure where you got your medical degree, but lung cancer and breast cancer are totally different beasts.  All people react differently to treatment for cancer.  I don't like being compared to anyone else with cancer when it comes to survival, because I'm different. It can go either way, but not all cancers are the same.  Please remember, NOT ALL CANCERS ARE THE SAME, NEITHER ARE THE PEOPLE THAT FIGHT THEM.

4.  Please don't ask if I smoked.  Seriously?  I may get arrested for decking the next person that asks me that after I tell them my diagnosis.  I know it's not their fault, it's our media and lovely cancer society that has driven this stigma into the minds of our society.  Maybe that's why I don't go around hitting people.  We need so much education in this country.  Not just for cancer, but for so much more...

Here are some things to remember about my situation:

1.  Be Patient and Forgive Me.  I have so much on my mind.  I'm forgetful, I forget whole conversations sometimes.  I also get angry sometimes.  Who wouldn't?  It's not necessarily at you, but you just happen to be there.  I may look fine most days, but my hair is breaking off, I'm doing everything I can to look normal outwardly, but sometimes suffering immensely on the inside.  I know my life will never be the same and I'm still accepting this new normal.   So, if I lash out at you or forget a conversation we had 5 minutes ago, please forgive me, because I would do the same for you.  I'm on so many medications that effect my short term memory, it's not that I'm not paying attention or don't care or even angry at you.  It's just a side effect of this "normal" I'm living.  I guess that's how I'm figuring out who my true friends are these days.  They are patient and they forgive quickly.  The ones that can't do this, well, I'm sure they will be just fine without me in their life....because to me, they're already gone.  

2.  Silence and Presence are Golden.  Some of my best friends know me very well.  They are the ones that were there for me from the beginning and they knew just what to do.  Just be there.  I don't want to talk when I'm depressed.  I also don't want to be alone.  So, in the beginning my friends would just come over and bring t.v. shows we could binge watch or entertain me by dressing in silly costumes and fighting each other.  Anything that takes my mind off of the diagnosis and makes me laugh or just not think about it.  They even took shifts, ensuring I was never alone.  If I get any bad news, I hope you all know you have to do this again!

3.  It's Never Over.  Just because there isn't any detectable cancer in my system during a few PetScans doesn't mean I'm cured.  This fight will never be over, unless someone stumbles upon a cure for lung cancer.  It's all about trying to treat and control it and most importantly, live with it.  Please remember when I'm so tired and I don't feel like getting out of bed, I'm not being lazy.  I am doing what I can.  There are days this happens (like today).  It usually occurs on Mondays and Tuesdays.   I also sleep more, 10 hours a night at least...and maybe a nap here and there.  Yet, some days I wake up ready to take on the world.  I can't predict those days, so once again, forgive me if I flake out early or don't do anything at all.  I do reserve my energy to fulfill my promises to Karley.  She does take precedence over others, which is probably why I stay in bed Mondays and sometimes Tuesdays, I have her to take on after school!

4.  Please Tell Me About Your Problems.  Just because I have this going on doesn't mean I'm not your friend.  I'm here for you.  I want to know about what's going on in your life because I care.  The ups and downs.  If you want to call and complain about your boss, I'm good with that!  Your kids, your health, you need advice, anything.  You don't have to feel like you're stressing me out when you vent to me....just don't make me get involved and we are good!

That's about all for now.  I'm sure I left some things out because after all....I forget everything these days!

And don't feel sorry for me....just pray for me.  I'm a big believer in the power of prayer.  Thank you all for reading my point of view.   Maybe it will help you deal with me or others with cancer or maybe you all will think I've lost it and totally disagree..I'm okay with either.  I'll probably forget I wrote this in an hour anyways.

Meanwhile, here are a few pics since the last blog, and one of my crazy hair growing in.  Karley makes me put a hat on but thought I would share my "real" tarceva hair.









This verse we discussed in church yesterday. a little something to think about:

Ephesians 5:15-16
Be very careful, then, how you live - not as unwise but as wise, making the most of every opportunity, because the days are evil.

Sunday, August 17, 2014

Gifts

What a weekend.  I'm not even sure where to begin, but will post a ton of pictures at the end so you can see how much we did.

I want to thank God for giving me the energy and strength to be able to do so much.  I also want to thank my family and friends who made it out to our Free to Breathe 5k.  It was so much fun!

We arrived in Atlanta Thursday night. Karley brought her friend Bella , so the three of us flew in on standby.  It was Bella's first airplane ride and trip to Atlanta.  She laughed so hard she cried.

I decided to take them to the World of Coke Friday.  I knew our friend and lung cancer advocate ,Chris Draft, lived near there so invited him to lunch with us.  While eating, he was approached by the coach for the Dream, Atlanta's WNBA team.  She asked if we would like to attend the game Friday night at Phillips Arena.  We decided to do it and Karley, Bella, and I went to the World of Coke after lunch.

The girls loved it and Bella tried every coke product in the world.  Then we went to a park where they both decided to spin around in some spin chairs until one fell off into the bushes and another got sick to her stomach (I warned them).  Thank goodness we already had plans with Chris for later and he lived across the street from the park.   We got there and bandaged one and let them rest.  Thank you Chris!  Then we helped him with his ALS Ice Bucket Challenge....which was hilarious!

Afterwards, we went to the Dream game.  They won.  The girls were more into meeting the cheerleaders and mascot, but they had fun.  Lots of pictures below.  Thanks again Chris!  Handling two only children all day was rough.  Couldn't have done it alone.

We got home late and had to be up at 6 am for the Atlanta Free to Breathe.  So many friends and family came out to show their support.   Thank you all!!!  I made a public speech (which has always made me nervous).  My friend Shermaine came out, even though she is having a tough time right now.  She desperately needs your prayers.  She's fighting the beast too and has two young boys she wants to see grow up.  So all prayer warriors, please pray for her.

Although our team didn't place, it felt amazing to cross the finish line with my girl this year.  She did such a good job and was ahead of me until the very end where she waited on me.  I love this girl more than I could ever put into words.

We met some great caregivers and warriors out there and it makes me want to do more, fight harder for those who can't right now.

We got home tonight and I'm exhausted, but wanted to get this out, because without all of you and our almighty God, I wouldn't be writing right now.  Please keep us in your continuous prayers.   This fight is not over.  I'm blessed that God has given me so much time already.


Romans 6:23 
"For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord."








































































































































































































Thursday, July 31, 2014

Honestly

Happy Thursday everyone!  We just got back from Atlanta yesterday.  Karley and I were doing a media interview for the Atlanta Free to Breathe Event coming up August 16th.  We had the interview on NBC with the only other committee member besides me that has lung cancer.

I last saw her in April.  She was so vibrant then.  Now, I'm worried.  She's such a sweet person with such a positive attitude but this disease is a beast.  It's relentless no matter what your attitude is...  Karley left the interview tearing up, afraid that I would get so sick....  I couldn't respond much except to say that I would do my best not too.   It broke my heart into a million pieces.

Recently I was told that "I can change my outcome with my mind.   Just believe I don't have cancer".   Well, I say to that, "I believe I can fly".  What will happen if I try to do that?  Us cancer patients are busting our butts trying to survive.  The last thing we need is someone telling us how to "survive" cancer.  Don't you think we've done the research?  I'm sorry but it's really getting to me lately.  Everyone is trying to help and have an opinion, but some things are just part of God's plan and beyond our control.  

I just had to rant for tonight.  Sorry for that.  Some days are good, some are not.  Please understand that we are fighting for our lives and don't need to feel like it is our own fault that we have this disease and that we can control it if we want too.

Ephesians 2:8
"For it is by grace you have been saved, through faith - and this is not from yourselves, it is the gift of God - "

Sunday, July 13, 2014

Clueless...but not anymore

Happy Sunday all!  I hope everyone is having a fabulous day thus far.   We just got back from Atlanta again on Wednesday.  We've been on the go all summer and it's been fun.  Yesterday and today have been lazy days for me though.  I've been going so much I think it may have caught up with me.  It's been amazing laying around though...

Today I watched that movie Clueless.  I realized it's been almost 20 years since it was released.  I used to love that movie when I was like 15....and I watched the whole thing again today.  I love watching movies that take me back to a simpler time when I had my whole life ahead of me.  Things were so different back then, anything was possible.  And there wasn't freakin cancer anywhere on my radar of course.  I didn't appreciate how great my health really was.

Then I began thinking, I was Clueless, not like the movie of course, but the title.  I thought my whole life would be different.  I had no idea all of this was coming.  Who does?  When we are younger, we have this sense of invincibility that can be so dangerous.  I pray, and believe, that I will be here for Karley when she hits that age.   I look back at the stupid things I did and am so grateful I had two parents that cared so much.  But me, I was totally Clueless.  If only we could see the future...I'm not sure I really would have done much differently except have a closer relationship to God and appreciate the little things more.  Time goes by so fast...

On another note, but somewhat related, I'm on the Atlanta Free to Breathe 5K committee this year, and if you don't have plans and are in the Atlanta area August 16th, we would love for you to come out and join us for this run/walk fundraising event.  Our team this year is called "Team Karley" and you can register or donate here:  Free to Breathe Atlanta

I've included our group photos from last year.  You don't have to run....some of our friends did and even placed in the race, but I'll probably be walking.  Free To Breathe is dedicated to doubling lung cancer survival by the year 2022 and 80% of your fundraising efforts go directly to research.  That's amazing!  So, if you can't come out, you can still help by donating to our Team.

In the meantime, thank you for your continuous prayers and support for my family and me.  They mean so much.  This is a never-ending battle and I'm so blessed to have our Father and all of you on my side.  God bless you!










Romans 8:31
"What shall we say in response to this?  If God is for us, who can be against us?"