Tuesday, June 27, 2017

Forever Young - Molly Golbon

I am at somewhat at a loss for words today, but am going to do the best I can.

Arash Golbon found me on a social media site a few years ago.  He realized that his wife, Molly, and I both had the same form of lung cancer.  Stage 4 NSCLC Adenocarcinoma EGFR,positive with a deletion of exon 19.  That is pretty specific to say the least.

Arash contacted me and we became very good friends.  We always tried to look for the silver lining or talk about anything to change the subject from this awful disease.  Although, he was so well versed in treatments, I went to him for everything.  Molly was diagnosed about a year after me, if that.  They have two young daughters.  Arash was always researching and keeping up with treatments.  He was determined to save her.

Molly and I were on the same treatment for a while.  But, regardless of how specific our cancers were, we were still different somehow.  I began progression but it was radiated and I stayed on my current medication.  Molly began progression and it went to her brain and throughout her lungs.  Each treatment she endured failed her.  She was a fighter.  She did not want to leave this world, she was too young with too much to live for.  It has been a roller coaster for them, as it is for all of us living this life.  A life where no one gets it, except for the people you're most likely to lose.  It's a crapshoot.

And then, there is the emotional turmoil you face.  If living with this doesn't make you some kind of crazy, I'm not sure you're mortal.  I have lost friends along the way, a lot of them.  I can't cope with a lot of things.  I just sleep to deal with it.  Sometimes I feel like I'm sleeping what's left of my life away.  I've learned things can go from NED to death in a matter of months.  I've also learned I don't want to go out without getting the chance to say "I'm sorry" to loved ones I've wronged, for being selfish.  I get panicky about it.  I also never want to leave Karley, my world.

But this hit close to home more than any other of my friends.  Maybe it's because Arash and I have been close for so long, or maybe it's because we have the same cancer.  I don't know the answer.

Molly was braver than I could ever be.  She continued working while sick.  I think she was determined not to let the cancer take her.  Her family was her life.  And right now Arash needs our prayers so much.  Not only did he lose his wife, but he has two young girls he has to be strong for because they just lost their mother to a disease that has been so poorly underfunded it makes me sick.

Lung cancer is such a beast.  It doesn't discriminate.  I don't know all the answers, but I know God has a plan for all of us.  Right now, it makes no sense to me, at all.  I'll never turn my back on God but I can't wait to get those answers.

This has turned my world upside down.  Not just Molly's passing, but everything in general.  I'm afraid of losing anymore friends so I panic. not just to cancer but to them leaving me.  I know I'm not the life of the party and sometimes am in bed at 8 p.m.  But that's my life now.And I'm a bit selfish, so don't make the best of friends.  I love you Amanda, thank you for always watching out for me and putting up with my "crazy ass".   You're the best friend anyone could ever have and I'm blessed to have you in my life.

Another issue is the way I look.  I don't look sick.  When you don't look sick, people forget that you are.  They don't forgive like you do.  They don't love like you do.  They don't constantly think that this can go downhill in a heartbeat.  "The trouble is, you think you have time" - Buddah.  None of us are promised tomorrow.

Hold your loved ones close, forgive, and just try to be happy with what you have.  There is always someone out there who's worse off than you.  Pray for them.

Thank you all for your continuous prayers and please pray for the Golbon family.  A mother's love is so great, it breaks my heart these poor girls won't see that growing up, but I know Arash will keep her memory alive.

God bless you all.  Rest in paradise Molly.

Friday, June 23, 2017

Shout From The Top of Your Lungs

Happy Friday everyone!  Things here have been a bit difficult.  I think Karley is suffering from a bit of depression.  She doesn't want to leave my side.  I think she senses my sadness lately.

But, yesterday I visited my psychiatrist and had my medicines changed.  I took the first new pill yesterday and could already tell a difference in my mood.  I know a lot of people believe that we shouldn't have to take antidepressants, etc., but living like this is hard.  If you can do it, you are much stronger than me.

I was named a Healthline Top 10 Lung Cancer Blog for the 3rd year in a row.  It's such an honor to be placed in the same category as the great advocates and bloggers listed here Healthline Top 10 Lung Cancer Blogs of 2017.  If you need some inspiration, advice, we all offer a different perspective.  I focus on my faith, but I'm not perfect.  I'm real.  So, if you want to know how I am or how I feel about this, I totally let my emotions out through my blog.  Some of the others are way smarter than me and constantly update new treatments and tell stories of the hardcore advocacy.  I go to those people when I need help.  I write my blog in order to help not only me get my emotions out, but to also let others with any kind of cancer feel they aren't alone.  Both physically and mentally.

Some more good news, look out for me to fly across the country thanks to Bonnie J. Addario to participate in their Living Room on July 18th.  I'm super excited to for this opportunity to be able to advocate more for Lung Cancer.

I love our lung cancer advocacy groups and I feel that if you really want to make a difference, you take every opportunity to get out there and show the world what lung cancer really looks like.   This will pave the way for more funding for research to help us survive!  So, ANY opportunity I get, I take.  I've worked with LUNGevity, Bonnie J. Addario, Free to Breathe, Lung Force, Team Draft, Lungcancer.net, etc. and they are all fantastic organizations that do so much work in the form of advocating for lung cancer by not only sharing information but also sharing our stories, as real people that need help.

I was recently told a statement was posted on social media speaking about how non-profits can't compete with "for-profits"  I'm not sure.  I wasn't aware this is a competition.  This is my life and I'm telling my story to whoever will listen.  What I do know is, my medical bills are going to send me into bankruptcy.  Therefore, I do get paid to write articles for lungcancer.net.  This does in no way make me an advocate for myself.  It is the same types of stories I write for all of the organizations.  In fact, I haven't even invoiced them yet.  Because once again, it is an opportunity for publicity for Lung Cancer.   I am advocating for lung cancer, not myself.  And non-profits, well the people that run them get paid pretty well.  As cancer patients, we need money as well.  It doesn't mean we are going to solely work for only "for profits".  In fact, lung cancer advocacy should not be a competition.  We all have a common goal.  The "For Profit" that pay us for articles have no problem promoting the non profits.  This is not a competition.  This is our lives.  This is our hand that we were dealt, we have to learn to play the game.   Gain exposure, increase funding, increase research, save our lives.  I'm sorry if you don't agree with me, but I didn't get voted "most outspoken" in school for nothing.  I am open minded.  And maybe I'm missing something, but I say the more we get the word out, the longer we live.

Ok, well, that's it for today.  I got my lazy butt out of the house yesterday and hung out with some old friends.  I had a blast!  I'm blessed to still be able to do this.  Slowly coming out of the funk!

Thank you for all your continuous prayers and please continue to pray for all of those suffering from this awful disease.  Cancer is cancer.  And it sucks.  But cancer cannot and will not take away my relationship with God, no matter how bad it gets.

Monday, June 19, 2017

What is there left to say...

I don't know.  I've tried for years to be positive.  To be some sort of hope and inspiration for others.  And though I may be because of my fight on a first line treatment so long, it is the loneliest road traveled.  So many friends I've lost.  So many people don't want to be close to me because I'm a ticking time bomb.  

Everyone worries, but they shouldn't.  I'm not going anywhere until God is ready for me to.  I am just so tired.   Tired of living with this, tired of losing friends,tired of watching friends suffer, and tired of my life being stuck.  It's a life of every 20 weeks now.  

I sound like such a baby because I'm doing well, physically.  Luckily, I'm going to my psychiatrist this week and adjust my meds because mentally, I'm in such a funk.  Hopefully, I'll be out of it soon.  One of my friends is not doing well at all.  It physically is making me sick.  I feel like I can't get out of bed so much more now.  I did today and Saturday.  I'm trying, trying so very hard not to give up on life.  I have so much to live for.  My baby makes me get up, I don't want her to see me like that.  But it's the kinda of trauma that never leaves you, every. single. day. you live with it.

Maybe one day, with your prayers, and by the grace of God, we can live.

Tuesday, June 13, 2017

Is Santa Real?

"With courage you will dare to take risks, 
have the strength to be compassionate,
and the wisdom to be humble. 
Courage is the foundation of integrity" - Mark Twain

The problem with having this courage, it can be a very lonely world.  Not many people think about this being their last day on earth.  It's a hard pill to swallow.  But, it's amazing to me how many people are so certain of their tomorrows.  I'm not.  Therefore, I love deeply and forgive easily.  I thought some of my best friends were just like me, but I was wrong.  Living with this is probably the loneliest you'll ever feel in your lifetime.  

In the beginning, people you haven't talked to since elementary school come out of the woodwork, praying for you, wanting to meet up with you, etc.  But the longer you live, the more fade away, until there is nothingness.  You are tired because your body is in a constant fight.  You aren't that fun person you used to be, so those friends move on.

That's when you realize, you have God.  In that moment, you are humbled.  I used to be a totally different person.  Work first, family second, God third or fourth.  I look back and think about how I used to be and literally get down on my knees to thank God for leading me to this moment, where I will take risks and have the strength to be compassionate.  To not hold a grudge, and to forgive no matter what. 

So, I may have lost some of the best friends I've ever had.  And I would be lying through my teeth if it didn't feel like someone stabbed me with a jagged edged sword and keeps twisting it over and over, because that's what it feels like.  The loneliness can be over powering at times where I just go to sleep to not feel anymore.  In all honesty, I feel like God is the only one who hasn't abandoned or forsaken me most days.

Thank you all for your continuous prayers, and I do pray that none of you has to feel this loneliness or despair.  Of course I will have good and bad days.  Today is just a bad day.  It's like finding out Santa isn't real.  That's the way it was for me today.  Some relationships aren't real.  Some of my nearest and dearest are gone, and right now I think I need the Lord to hold me instead of just holding my hand.  I'll be better tomorrow, God bless you all.  I just had to get my emotions out.  This is how I do that now so please....don't be mad at me for it or think it pertains to you.  If I held these emotions in, I would implode.

Sunday, June 4, 2017

More Living with It

I've been struggling a little lately.  I don't care too much to think about my future, or what's to come, so I've been trying to fill that void.  I'm so glad I went to church today.  It is definitely what my soul has been needing.  We talked about how we go through troubles so that we may be closer to God.

I feel like I haven't been on the right path lately.  I need to be on that path.  I'm by far not perfect, I know I'm a sinner, but I need to be better person.  Eating kale does not make me a better person Lisa Goldman.

I think that God has done an amazing job on our Karley.  She just got back from a christian camp and has been sad since she got back.  When others decided to be saved during the camp, she cried.  My girl has such a strong faith.  That, in itself, gives me a peace beyond all understanding.  I'm not scared anymore because of it.  It was what I worried about for so long, but our church family has helped her find God, and of all the things I could be proud of her for, this, I am proud of the most.

I hung out the other night with Jaysen, an old friend from work, along with NJ and Brent.  It was bittersweet.  We hadn't been hung out in so long, but once again, there was a void.  That void couldn't be filled.  It's coming up on a year next month.  I can't believe it's been almost a year, the worst day of my life besides being given a timeline myself.  Some things you just can't unsee, no matter how hard you try.  But one thing he taught me, don't settle.  Don't be normal or mundane.  Because "sam, you're not made for this, you are brilliant and made for so much more".  And maybe he was right.  But it's hard to feel that way when you live in a constant state of "should I plan years out or not?"  Screw it.  I'm gonna plan years out.  And I hope all my friends plan their years and we all look back at this and laugh at how much the stress consumed us.

For now, thank you all for your continuous prayers.  Please keep them coming.  And please pray for strength while I make difficult decisions.  God bless you all.

Karley's Camp - That's my girl, tall one in the back!