Catch Up, Cancerversary, and more

 Today is my official 10 year Cancerversary.   The doctors gave me a year to live.   NEVER LISTEN TO THEIR PROJECTIONS.  Let me tell you why.  

I was preparing for the past 10 years to die.  I saved money for Karley, but not myself.  I've planned for Karley's college, but not my future.  Of course I had somewhat of a plan beginning this year.  It was a plan that got me through until Thanksgiving.  That's when it completely fell apart.  So, it's just myself and the dogs, and I'm so lost.  

My disability will not cover somewhere where I can keep both of them but they love each other so much.  I can't bare to separate them.  I had someone I was going to live with.  Someone that has let me down in the past, but of course, I trusted too much.  I wanted to be able to be at peace for the time I really get sick and need help.  

I've since come to learn, I'm alone.  My sister is in San Diego and my mother isn't going to live forever, we are all getting older, but to say I'm scared is an understatement.  I'm terrified.  I can't think of anything else other than hospital hospice.  

I didn't plan for it or want it and there is no way I'm making Karley take care of me.  I want her to live life to the fullest, not be bogged down with my issues.  

I've been let down before, but the realization that I must move in 7 months, alone, is just kicking in.  Thank you God for Xanax.  I plan on leaving this area and am going to head north since my mom is in Atlanta.  

When you trust someone with your future when you have cancer, you should be able to fully trust them.  Honestly, it's so shameful to let down someone with this disease.  And it's not just that person.  So many people think, "10 years, she's fine, she survived".  But, that's not true.  The cancer lays dormant and can come back at any time.  So, both the person I loved and my very best friend have both abandoned me, or let me down to the point they would be toxic in my life.

I keep questioning God what I did to deserve this.  I try to help people to the point I get overwhelmed.  You can really only count on yourself in this world.  Put your faith in God and see where it takes you.  These next few months should be interesting.  I get to put a whole new future plan together, after living here for 17 years.  

I'm happy I am here to see Karley graduate.  It was another milestone I needed to accomplish.  And to all those who I've loved that have gone before me, I feel somewhat guilty.  You can't help but feel survivors guilt when you've lost so many friends.  

Anyways, these are my thoughts for tonight. The Pirates of the Spanish Main did the second annual white ribbon project on the island today.  I plan on writing a whole separate blog about that in a few days.  

Otherwise, just realize not only do I feel survivors guilt, I'm also trying to figure out how to survive.  Please enjoy these pics of Senior night at Glynn Academy Volleyball.   Our girls made it to the elite eight in the state but they all caught the flu and had no energy!  Still super proud of them making it this far!

By the way, Riley Mansfield and Karley are so close that I couldn't even look at the two of them without crying, or Alyssa, Riley's mom.  They've played together so long and Riley leaves for Tulane in January, the day before Karley's birthday.  I have loved the love these girls have had for each other from Karate when little to volleyball throughout.  

You can pinpoint the exact moment I  started crying.  On the overhead, they said, "when asking Karley who is her biggest inspiration, she said 'my parents'".   It's in the pictures.  I don't think I stopped because they asked Riley what the best part about playing volleyball has been, they announced that she said, "The friendships that you make".  And she and Karley just looked at each other.  I was a hot mess that night.  I didn't stop crying.  

Life is a rollercoaster.  And I cherish every second of these moments when I get to be here for things I wasn't supposed to be here for.  And I give all the glory to God.  

I also promise to start blogging more.  How else are you all to know where I end up!  I'll update the white ribbon project Wed. or Thur.  In the meantime, God bless!

Sometimes, a grown up likes to play Fortnite -J. and Dad

Just want to let you guys know, my name is Samantha Mixon, I was diagnosed with stage 4 NSCLC with an EGFR mutation in 2012.  Now, I'm assuming J's dad thinks I'm not the real Samantha Mixon...but come on.  Those that know me know I've loved playing video games when stuck in the house.  Right now, I'm stuck.  And I'm not ashamed.   We play Fortinite in this house.  It gives me an escape when I desperately need one. How do I prove you prove to someone you are who you say you are?  Well, I'm writing in now.....and Please, Facetime me J's dad.    You have no idea what I've been through.  So playing a video game helps.  Dad cannot do research and say I am fake, just because I have articles online..  J's got my number.  Facetime me.  Please.  

And to all the moms and dads out there, when I play and kids are playing, I don't let your kids cuss or pick on others.  It's not right and sometimes mom and dad don't see that.  So, Mr. Jerzee's dad, I challenge you to facetime me.  So you can see, I have been fighting for my life for 10 years.  I'll show you my array of wigs or the black dress I wore to the superbowl.  And would even show you my daughter but she's out of town. 

So, It is very disheartening, that an adult such as yourself can come to the conclusion that I'm fake.  Especially after this fight for my lfe that I'm still in.  However, I will continue to fight with God on my side, and when you meet him at the pearly gates, you can explain why you lied to your daughter.  J, It was fun playing on there with you.   But I cannot stand liars.  If you have a question, ask it..  Dont ASSume, because you know, thats a bad look.  A little disappointed in you too J. You didn't do your own research.

However, J's Dad, I do applaud you for keeping up with who your daughter was playing with.  Too many parents these days don't do that.  But if I end up playing with your kid, rest assured, no creepers will be around.  As a mom myself, I would want someone to do the same for me.   So how about a little communication before you pass judgment?  My only Judge is God.

I had to step away from advocacy to preserve my own mental state.  But I still show up most times and keep my blog active.  Don't forget, none of us are here forever.

She has my number and so do you.  Think what you want, but I am me.  So you can continue lying to her or call me.

and....Rona got me  UGH

And to Gina Hollenbeck who we recently lost.  You were an amazing advocate and your legend will live on.  I love you girl.  My heart was broken yesterday.  The Lung Cancer community is no longer the same.  Fly high sista.  I'll see you soon.  And teach you to play Fortnite too.  

She's fine. She's been alive so long and doesn't even look sick. -TRIGGER WARNING

 I don't pay attention to social media anymore, so unless someone tells me, I rarely know what's going on.  I am not purposely insensitive.  And I don't expect people to stop their world because of me.  I always love prayers.  But I mainly keep to myself because I know others have so much going on.  Unless something drastic happens, I never post about my condition anymore.  I have heard this so much, that I can't begin to explain how I have to just sit there and listen to people who have never been in my shoes, or tried, to chastise me for not checking on them.  I don't know if something is wrong unless someone tells me. I am doing my best to survive and be a good mother and good Christian.  Please forgive any grammatical errors or misspellings (sister lol).  I'm too tired to check.

Speaking of shoes, after over 9 years of tarceva, my nails are growing into my skin.  I'm constantly having to pull them out.  I'm going to see a dermatologist too, if anything could be done.  It's not just my toes, it's also my fingernails.  In fact, some of my toenails are just falling off.  All of my nails are weak and brittle and sometimes the nail breaks off in the skin and I have to keep digging.  I have a topical solution to put on them, but needless to say, it's painful to type because my fingernails are so thin.  

I've gained about 20 lbs since January.  Yay say most cancer patients.  But, the only reason I gained it is because I've been dealing with my nails and MRSA since the holidays.  I haven't been able to walk properly without pain.

Additionally, I have moderate degenerative cervical disc disease as well as a possible torn rotator cuff.  I've also been living with a fractured rib for about two years.  When I bend over to clean something, part of the rib makes presses inside and I have to immediately lay flat on my back.  It's so frustrating to barely be able to sit.  I mostly lay back or walk, not sit.

I've also heard how I've kicked cancer's ass.  That could be further from the truth in clinical terms.  I have a genomic mutation that will eventually find a way around my medication and I will become actively sick again.  By then, I'm biding my time and waiting patiently for something great to come up.

I still get pet scans every 3 months.  The first week in July I have an MRI, Petscan, Oncology appt, dermatologist appt,  Pulmonologist appt, Orthopedic appt, and a mammogram.  I'm pretty sure I will meet my annual deductible at that point.  

I just had a follow-up with palliative care, which has been a lifesaver for the pain.  Additionally, I will most likely end up in the ER because the back of my calf is hurting so bad I can barely walk.   Which could also mean a DVT (blood clot).  I still have two smaller pulmonary embolisms.

A friend called me recently, and I completely broke down crying because I felt for once, that someone without cancer was really "getting me".  

You see, most people think I quit advocating because I was cancer-free.  WRONG.  I will always be stage 4 lung cancer until the day I die.  The best I can hope for is stability.  My right lung is awful.

Don't get me wrong, I have been amazingly blessed by God to still be here.  I'm not sure why (which is the same question I asked when I found out I was sick).  The reason I quit advocating is that the loss broke me.  Yes, motivational speakers will tell me to carry on for them.  But I'm tired, so tired.  All of the women recently passed in the last year or two.  My friend told me it's like being in a war.  He's damn right.  But, I didn't sign up for this and neither did they.  So, I hold them and my father close in my heart. And a huge shout out to Lyndsi Kofal who wrote a statement last night that nailed exactly how I feel mentally and physically.

I've always felt like I'm running in circles, Einstein's theory of insanity when advocating.  I burned out.  And I decided, that whatever time I have left will be with my family.  So, I have pretty much distanced myself from social media.  I'll post pics of Karley and memories occasionally.  But, when I open my feed, I can't help but be so deeply depressed seeing other lung cancer friends fighting, but still going downhill.  

After all, your heart can only take so much.  Mine is shattered and I don't know if it will ever be repaired.  

So, as for the title, I'm not fine mentally or physically.  I don't always look sick when I put on makeup, but I am.  And living so long is a blessing in terms of my daughter, but a curse when it comes to relationships, mentality, and pain.

So, trigger warning, the worst of the Pics are at the bottom.  But these are 3 different nails.  They are still attached.  I've had 3 just completely fall off.  So, folks, this is lung cancer.  This is me and not a day goes by I'm not reminded of my limitations.

ON THE BRIGHBRIGHT SIDETSIDE. MY HAIR IS GROWING, AND MY DOG IS CONFUSED.

MY WORLD

THESE WOMEN ARE GONE.  THEY ARE JUST THE ONES OVER THE PAST YEAR OR SO.

I MISS MY LITTLE SISTER IN SUCH A SIMPLER TIME

TRIGGER WARNING:  GROSS PICS BUT THIS IS REALITY.  AND ITS OFTEN.

I DIDN'T TAKE PICS OF THE AREAS WHERE I HAVE NO NAILS ANYMORE.

This huge nail grew under my toe.

Overdue Update

 Well, I've been super busy lately.  Cancer Treatment side effects are driving me to wits end.  My nails have been curling under the skin making them painful. Both toenails and fingernails.  So many people have treated me like I'm a drug seeker for the past 10 years, including my own PCP. 

With my targeted treatments I can only use narcotics, not any NSAIDS.  So, I've been breaking away from most social media because it's not real life.  And somtimes it makes me sad.  So, I'm living my real life through this blog.  It's not fake, not sunshine and roses; but exhaustion and painful joints and too many medications.  And by the way, I just began palliative care.  I'm not giving up. I'm trying to be more comfortable and live my best life.

My scans have remained stable, so far I've been blessed. And watching Karley graduate is my next milestone.   I cannot believe I started this blog when she was 7, and she will be 18 in January.

I praise God constantly for the time he has given me.  Life can change in an instant.  Be strong, for He is always with you.  So far this year, I've seen the unprecedented conviction of the first hate crime in the state of Georgia, with the conviction of the spineless men behind the death of Ahmaud Arbery.