My sweet angel

My sweet angel

Sunday, August 13, 2017

The Butterfly

Last Sunday, we arrived home from a few hours at the beach and a large and exquisite butterfly was waiting in our bush.  Ashleigh captured a picture of it.  It flew away but came right back.

In early Christianity, the butterfly was a symbol of the soul.  Its unique lifespan has had different meanings to different religions and parts of the world.  They appear to dance when fluttering around, reminding us not to take everything so seriously in our lives.  They remind us to get up and dance.

The lesson of the butterfly is to let go of old behavior and expand into a new level of existence.  It is a reminder that our current reality must be experienced for us to grow.  It is said we are to embrace these changes while keeping faith in the end results.  The old life is gone and a new one has begun.

Around the world, people see the butterfly as a sign of endurance, hope, change, life, and resurrection.  All of these things are just so beautiful and the fact that maybe one of our friends came back to visit, is somewhat bittersweet.

Today is hard day for my friend Arash and his family as they celebrate the life of Molly Golbon.  She succumbed to this awful cancer a few weeks ago.  We've been praying for strength for her family and friends.

Today is also my dear friend Kelly Shannon's birthday.  Unfortunately, she is still in the hospital in need of prayers.  

I feel blessed that I'm doing well.  And I'm hoping the butterfly was there to let us know that Kelly is going to be just fine.   We don't take anything seriously when we talk or are together.  She is so silly, she knows how to dance, even in the darkness.

In other news, Ashleigh started working, Karley started 7th grade and Livi 8th.   I still love Jesus, my friends and family, and tacos, and the world keeps turning, no matter how bad things get.  It's not going to stop for you, just keep faith in the end results.  I was given 12-18 months to live, and though the road has been tough and I've had so many changes, I'm still here.  I may not be prettier on the outside for sure, but my soul has changed.  It is kinder, and I'm so grateful for that.  Oh, and I've learned to dance in the darkness.

Thank you for all your prayers for not only myself but friends and family.  Arash's family and Kelly's family really need them now.  



Ash at work

Kelly Shannon...so silly






Monday, July 31, 2017

I Will See You On The Other Side

So, most of you in the lung cancer community know that Joan Fong went home Saturday.  I love Joan and Ron.  I am a Christian, and I'm far from perfect, but they were the first at the LUNGevity Hope Summit this year to praise me for giving so much credit for my survival to God during Lisa and my panel.  They told me it took courage.  It felt good to hear that.  After Molly's passing, I was very upset (my last blog) and was questioning why I'm still here.  Why do I get to stay?  Why are some of us here while others are gone?  It gets depressing when you're losing someone you know nearly every week.  But as I was crying and questioning these things, my phone beeped and there was a message on my Team Samantha Mixon page.  I asked if I could share with all of you and she said it was okay.   This woman is a gift from God.  She came to me when I needed to hear this the most.  I keep rereading it for inspiration.

This is what came through.  I know it's long, but I seriously cried while reading it.  It gave me so much encouragement and inspiration.  I do wish I could've met her daughter.  Thank you Ann for giving me encouragement at the precise moment I needed it:



"Dear Samantha...I have put this message off for almost 5 years now. It wasn't that I thought you were going anywhere; the fact is, I didn't know how to respond. What follows will show you what an unbelievable statement that is.
My name is Ann Tackett, mother/caregiver to Allison Tackett, our precious 26yo daughter we buried the day before thanksgiving 2012. She also had lung cancer ( adenocarcinoma, non-small cell). During the after-shocks of her life, I have followed you all this time, praying for every need or concern, peace and comfort for you and your family...I prayed for God to show you why you are the chosen one to live with this horrible disease and still try to make a normal life for you and your family. I never saw, until your last post about Roy, why perhaps that you are the PERFECT one; the ONE to get the job done that needs doing. YOU !
As our cancer diagnosis and prognosis is handed to us, we all go through the normal emotions and after effects that are usually textbook. I did, our daughter did. But what I see in your blogs now, is that you've "been forced" to join the "cancer club" and to add insult to injury, looks like you've been appointed President by default... you've outlived (mostly) everyone you've ministered to and loved on through their journey. You've had your heart broken so many times. No human should have to go through what you've seen and lived with all the folks you've had the opportunity to work with.
But, from my semi-objective view, I don't see your situation as defined by that stupid cancer, or by all the atrocities it brings...
I see an earthly angel; one who people can count on to hold their hand, wipe the sweat off their heads, take them to the hospital, or pray for them. It appears to me that you are doing exactly what you are supposed to be doing...loving, giving, caring, and hopefully receiving the blessing of our Lord in your own heart. Thank you sweet girl, earthly human angel. I wish my daughter had had a friend such as you when she went through her cancer. You would've loved her. You can see her Facebook under Allison Tackett...we have placed it "In Remembrance Of".
Well, I thought it was time to tell you I have lived your graces, your pain, your blessings, and your family through your blogs...I have loved them, as you have always been frank and candid. That was always ok with me...unless one lives through cancer and its effects, there is no room for judgement of any kind. I see a person who puts others ahead of herself and loves unconditionally. Your family must be so proud to call you wife and mama.
Thank you for believing in the good of mankind...even in your lowest of times and health. I believe in you and your mission. Please continue to post; you never know who you may be touching...or even changing their current or eternal life.
God bless you sweet angel.❤️
Ann Aspinwall Tackett"



Thank you all for your continuous prayers and please pray for the Fongs.  I can't wait for that pasta party, as Karley would say. I always add pics, so here are a few of Myrtle Beach and the mountains.  It's good to be home.   I hope her message resonates with some of you long term survivors out there.  It is not the life for the weak...Rest in Paradise Joan, you are a true testimony to God.

















Saturday, July 22, 2017

The Other Side

I arrived in California Monday to work on a project with the Bonnie J Addario team.  We had never met in reality, just social media.  Her organization is amazing, she's so sweet and dedicated and Samantha, on her team, is so trendy.  I love her taste in clothes.  I can tell how dedicated Bonnie is to advocating for lung cancer, despite the many obstacles facing all of us.  I was also able to attend my first Living Room session but got a little sick so had to leave.  I saw so many of my friends from the community.  Ron and Joan Fong were able to attend.  She isn't doing well and told me she was going to hospice.  She seemed okay with that.  Ron and Joan have a very strong relationship with the Lord.  They left before I did, and when I messaged Ron to tell him "I didn't get to say goodbye", he messaged back, "Joan said she'll see you on the other side".  Talk about reality slapping you in the face.  It is so very sad, but I know she will be free of all of this, and for that I praise God.

 I hated leaving the Living Room early so early.  The doctor I found out I had strep so I got some amoxicillin and just finished my last dose.  I was so sick the first few days out there.

While planning the trip, Molly Golbon passed away from the same mutation that I have.  Her husband, Arash, and I have been friends since Molly's diagnosis.  We thought Molly would respond to treatment like I did.  But every cancer is different.  And unfortunately, she didn't.  When I learned of her passing, the Addario foundation extended my return to Friday (yesterday) so I could see some of my friends including Arash and of course Lisa Goldman.

Everyone is still mourning Molly, I was able to play with the girls while Arash was able to get some things taken care of.  I fell in love with those two girls, Madison and Dillan.  I can totally see Madison and I as partners in crime.  And Dillan is just a ball of energy, laughter, and joy.

Arash and I thought we would go out to a local bar but the girls wanted him back so we weren't gone long.  Most of our time was spent at the Golbon's house.  It breaks my heart those sweet girls have to go through so much at such a young age and Arash become a single father.  He's doing a fabulous job.  It's hard for parents when one is lost forever.  We tend to spoil them out of guilt.  I totally did that with Karley when I was diagnosed.  But, they need spoiling for a little bit.  These children shouldn't have had to lose their mommy.

Arash is stressed and so sad, but I know our lung cancer community will rally around him and his family during this difficult time.  I just wish we all lived closer.  

And we tried to eat meat every night in honor of Lisa Goldman, who in turn made me taste one of those nasty drinks.  Madison spit it out.  She knows, we have good taste!

Anyways, I hope to visit with all of them again, as well as everyone at the Addario Foundation.  It would be great to have network like that here.  But, I know I always have people in my corner, even if they aren't down the street.  

Thank you all for your continuous prayers and please pray for the Fongs and Golbons right now.  I tried to bring a little bit of my southern craziness and silliness to the Golbon home.  They are coping the best way they know how.  

Below are some pics from the trip.  Now, I need to pack because I'm leaving again tomorrow for another week.  My bed is really upset with me for doing this to it but I totally promised I would make up for it when I get back.  God Bless

Bonnie J. Addario


Arash Golbon and Samantha Cummis

Joan and Ron Fong

The Addario Living Room

Eating meat for Lisa

Tried to all fit in so have 5 chins

Love this little one

Totally kidding, she hates it

Lisa Goldman

Partners in crime

Just Dance turned into "Jump on Sam", a new game





Friday, July 14, 2017

One Year

So things have changed a lot in the past year.  I've met some incredible people and our Goddaughter just relocated here.  Which means I get to see more of my best friend (because she misses her daughter).  But, I'll take it.  Karley has gone to several camps, we went to NYC for Christmas, and I got a new car.

My world kept going.  I didn't think it would, but it did.  For those of you who are just beginning to read my blog, this is the one year anniversary of Roy Reynolds untimely death.  Roy had leukemia, he was younger than me, and I swore he would outlive me.  He was my Robertson aka Data.  For those of you who attended my wedding, he rocked the bar.  He never expected to be paid for it either. He was like that, but I made him take money.

When he was first diagnosed, his sister, Renesha called me to the hospital.  I was dealing with my own cancer and she thought we would be able to relate to each other.  And we did.  One thing about Roy, he was so stubborn.  He refused to believe he would have cancer the rest of his life.  I knew it was just a part of the grieving process since I had gone through it myself.

Each day I went and visited with him while he was in the hospital and they worked to get his WBC count down enough to go home.  We would talk about life with cancer, and how it's possible to have one.  It's just different.  It's a new normal.  He wasn't going to be able to do everything he had always done and would get tired easily once starting his targeted therapy.

After he was diagnosed, he moved in across the street from us.  It was nice to have him there.  Not only had we worked together and were friends, but now we were neighbors.

The events that took place that day, I will never forget.  They are scarred into my memory for life and I still see them when I sleep.  There are some things that will remain with you forever.  This is one of them.

Renesha called for me to go check on him because he wasn't answering his phone July 13th.  After not responding to my knocking, I let myself in with the extra key.  I found him in his room, sleeping but it was incredibly cold.  He was sweating so much and when I woke him he told me he was in a lot of pain.  I called Renesha as I helped him to the car.  We were going to the hospital.

The hospital did not admit him although he had just been the day before with an incredibly high WBC count.  At this point, his gums were bleeding and his nose was bleeding.  He was bleeding.  The ER would not admit him despite our concerns and disagreements.  Renesha, Roy, and I all pleaded for him to be admitted but to no avail.   After giving him pain meds, they released him back to us.

I took him home, Renesha got his meds filled.  Roy and I stopped by Wendys, we were starving.  He tried to pay, because that's how he was.  He hated people doing stuff for him.  But, I wouldn't let him.

I dropped him off at his house after Wendys, told him I loved him and to call if he needed me.  He said he loved me too and okay.  Those were the last words we ever said to each other.

Later that evening, around 6 pm, I had been running errands and his friend Amp was standing on the porch of Roy's house as Renesha was calling me.  Roy wouldn't wake up.  I ran over to the house.  He was snoring but wouldn't wake.  He had so much sweat and had barely touched the food I gave him.  Amp dialed 911 as I laid a pillow under his head and placed it in my lap and stroked it, telling him everything was going to be okay and continued shouting his name.  Finally, he opened his eyes, looking bewildered, but then I saw the look of recognition and he went back to sleep.  Forever.

He suffered a stroke that day.  I can remember the doctors telling us it was critical and they were flying him to Savannah.  I had his change of clothes and phone in my car as I drove to Savannah Memorial.  His phone kept ringing.  It was driving me nuts.  I couldn't answer.  I didn't know what to say, but I had a feeling already that it wasn't going to be good.

Later in the afternoon on the 14th, the family decided to take him off of life support.  The doctor showed his sister and I his brain scans.  We could see the damage that had already been done.  There was no coming back.  We all knew it.

So now, Renesha goes on without her best friend and brother.  A family goes on without their only brother.  I can't imagine how incredibly hard it has been.  He was too young.  It was too sudden.  We didn't have a chance to say goodbye.

When cleaning out his house, I got the comforter I gave him and placed in a plastic container so I could still smell him when I wanted.  I fell into a deep depression.  But, one thing about Roy, he wouldn't want that.  He would want us all to be living it up while we can, cause he did.  His stories were so funny.  He lived each day to the fullest.  And his smile, well, his smile could light up a room on it's own.

So, Roy, I miss you so very much and I'll always have that hole in my heart that can never be filled for Robertson.  I love you so much too.  I miss our talks and our bitching about cancer.  But you are in no more pain, sorrow, and are cancer free.  And for that, I'm thankful.  I'm just selfish because I miss you and want you here.  I'll always love you.  The hole will always be there. And we will have quite the pasta party when I see you again.  Maybe even play a little pool and I'll beat you again.

Thank you for your continuous prayers and please pray for Roy's family and friends on this day.  They've experienced all the firsts without him now.  Holidays, birthdays, weddings, etc.  I know how hard it is on me, so for them, I really can't imagine.  

Rest in Paradise my friend.











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.