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.

3 comments:

  1. Your blog is so so great you express exactly how those fighter think
    God be with you!

    ReplyDelete
    Replies
    1. Thank you so much! Just speaking from the heart. God bless you too :)

      Delete
  2. Everyone here i think would have gotten a piece of their share from cancer, with some being able to survive and others dying even with the high efforts of oncologists. I had lungs cancer due to the fact that i was a hardcore smoker Due to the terrain in Alaska. I started to have symptoms in 2008 and i was diagnosed in April 2009. Several therapies of treatment were prescribed but none seemed to help me. I had just less than a year to live. Less than 6 months to go i read about Doctor Roland who is a herbal doctor that treats cancer. At first i doubted because my case was chronic and even if he could help it was already late. I had nothing to lose so i contacted him and he was very encouraging even in my condition and i placed an order for the herbal medicine which i used for 3 months. Even before i was done using it i felt strong and after it all i went for diagnosis and i tested negative. This is a permanent cure because it's been three years from my supposed death and i am still very strong and alive. Do not give up soon on yourself just reach him on (dr.rolandoscar@gmail.com) i am positive that if i can be cured you too can. I pray for all cancer patients worldwide.

    ReplyDelete