UPDATE - Scan results and pics...(not what I hoped for but I'll take it)

So, we dropped Karley off at Georgia Southern and then I came to Atlanta for scans.  I know I haven't posted in a while, but I'm still here.  I promise to let you all know if I start going downhill.  Nothing worse than reading a lung cancer friend died and you didn't get to say goodbye.

My friend Jessie and I hung out Sunday.  It was super fun.  However, her medication has begun effecting her heart.  Therefore, she's decided to discontinue it at this time.  December will be 8 years of living with lung cancer for her.

I had all of my scans yesterday in hopes that we could spread them out because copays are killing me.  The good news is, there is no knew cancer.  It is still stable and not causing any issues.

The bad news is, I've had another stroke, further damaging my brain.  It happened in the occiputal lobe I believe from the results. It's a distinct FLAIR so my oncologist is getting with my neuro-oncologist on how to proceed.  For now, I'm still on blood thinners and am starting a baby asprin in the mornings.

I have noticed that not only is my memory declining, but it's becoming harder for me to think of words or even spell them.  (so no jokes peeps!). And sometimes I feel like my eyes are crossing.  I'm following up again in 3 months.

I feel very blessed that I'm still here and got to help Karley move in to college.  I got to watch her graduate.  These are milestones that were virtually impossible in 2012.  And some of my closest friends didn't get to experience these.  I know God isn't done with me yet.

Please don't take this as a discouraging post.  It's far from it.  It's been almost 11 years!  And I've had a very good life and don't plan on going anywhere.  But if I do, my friends and family (especially my girl Karley) better remember how much I love them and no tears.  None of us are guaranteed tomorrow.  

You know I love to throw in pics of milestones and my girl and things we do.  

I did lose my best friend, Amanda.  I can't remember what happened, but I know she doesn't want to talk to me anymore.  I'be been worried about her.  I think I worried too much..  We were going to live together after our kids went to college. Because I can't afford to live without a roommate with disability.  So, within a year my entire life plan changed.  I really don't have a plan at the moment.  It's just hard thinking about everything and everyone I've lost over the past few years.

But here are some milestone and fun day pics.  Enjoy and I'll keep you all updated. Oh yeah, we moved out of our house after 8 years.  It was sad.  So many great memories. It's so crazy.  Where do I go from here? (besides more doctors 😞)

Like no more strokes?

My Heart

Jessie

These things terrify me

Had to get a selfie

Too fast - I remember signing her up for school here

The "moms" - our kids have been friends since Kindergarten

Graduation was freezing rain

Last mother daughter day before college- Barbie-I cried

Yes..She did that to her coach while walking at graduation. lol

Family Photo

Oglethorpe Point Elementary Class of 2023

Moms and daughters in that order -we go WAY back

Graduation and Jennifer Goare made it!

The dynamic duo

Georgia Southern Bound Pirates

Best friends and Varsity Volleyball stars

Class of 2023

One of my favorite senior pics

Counselor in training - Camp Connect

Got to see my lil sis and nieces after 2 years!

Karley's Dorms

GA Southern move-in day

My favorite pic of these two Besties

Love these girls

Lost

 It's now March 2023.  Never, in my wildest dreams did I think I would survive this long.  It's somewhat of a catch 22 at this point.  I'm so blessed that I'm here and will get to see Karley graduate, then she'll be off to college.

I didn't plan to make it this long.  What am I supposed to do now?  I get ssdi. in the amount of $2,000 a month.  I have good and bad days and I have to move this summer.  My former boss gave me some money to pay off any debts and I could not be more grateful for the time he has been in my life.  17 years, he's like a second father.

It'll be 2 years this month since my dad left us to go home to the Lord.  I thought I would go before everyone, but God keeps me here.  

And at this path in my life, I'm not sure what to do.  I can't afford rent, utilities, groceries, dr. appts and car insurance on my income.  Much less help Karley.  I had a plan for someone to help me out, that I've been counting on forever.  I would do the books and he would pay my rent.  

Well, that didn't work out and I just found out yesterday.  The week that I've had has been unbelievable.  For two weeks I was hardcore working day and night.  I was exhausted and thought it was part time, had no idea so much would be involved.   It was so stressful I'm still tired.  I did the best I could, but sometimes people can be so caught up in what they are doing, they don't see what you can still bring to the table.   

My friend and co-owner of the antique store I have a booth in was stabbed in the neck by a homeless person.  We weren't sure if he was going to make it and I kept thinking I stepped away from a lot of the lung cancer community, and he was safe.  So I wouldn't lose this friend.  And just the fact I almost did sent me over the edge.  Of course I looked incompetent to my new job so that is out the window.  

I think I'm having PTSD or something.  I just feel pain in my stomach to my heart.  It's hard to focus and concentrate.  I really want to not move, but I don't have a choice since my landlord has been so kind and let me stay so long.  

And now I'm not working with that guy anymore, someone I've counted on, how do I live?  I can't afford my own place but want one so Karley can visit.  Without her I feel numb.  If anyone is looking for a bookkeeper or someone to help set up HR, please let me know.   Or any ideas at this point would be great.  I'm so tired and lost and have just given it to God.  Anyway, any suggestions would be great.  Even open to a roommate.  I'll post more later.  I'm suddenly so tired.  I'll continue tomorrow.  Good night all

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.

Holiday Grief - The first year. Forever Changed

According to an article from Dec. 14, 2021. from the attached link  about the psychological effects of losing a parent as a grown child can change you forever.  Grief and the effect

I  am perfectly aware of the circle of life.  I know that we all will one day go on to be with the Lord.  And there will be no more sorrow or pain.  And I know that one day we will see our loved ones again.  But does knowing this really make it easier?

Since I got a lung cancer diagnosis 9 years ago, I've had two people that have been my rocks.  My parents have been with me through everything.  This is because my life is divided into two parts.  Before cancer and after cancer.  

Time after time, month after month, for 9 years I've been losing friends to this disease.  At this point, I don't think I can mentally handle involvement with more lung cancer patient relationships.  Yet, they are the people that understand so I need them.

As to my question about knowing the circle of life and having the faith that I have, does it make the death easer?  I really thought it would  I've lost loved ones throughout these 9 years.  And each one has taken a little bit of my heart.

This year I'm dealing with the unexpected loss of my father.  My hero, protector, comforter, and my person.  I'm not taking anything away from my mom.  She first and foremost has been by my side every single step of the way.  Everything I've been through, she has been there.

In the beginning, my father was too.  I remember how painful gamma knife radiation was after they removed the screws from my head without pain relief.  I've never screamed in pain.  I did that day and I thought my dad was going to jump over the nurses desk and attack them.  So I sent my mom, she can be a little more tactful.

But, my mom and sister both know that I inherited my father's bluntness, quick to anger, but also quick to help anyone in need to the point it puts my own health at risk.

So, after making plans for his birthday (May 15) on March 27th at around 8:04 p.m., I had no inkling that would be the last time I would speak to him.  He sounded so happy and healthy even though I knew he was getting weaker and during covid we had him stop going to my appointments.  

LOOKING BACK

Every year I've been at my mom's on Christmas and then driven the 5 minutes to my dads to see him.  There was no question, it was like clockwork.  I would be in Atlanta.  But my mom got very ill.  She's still battling a bit so prayers for her would be much appreciated.

Instead, I've been home by myself since Christmas.  I hung my dads old stocking under his urn and sat it in view of the Christmas tree.  I think Christmas was always our favorite time of year.  He would continuously watch "A Christmas Story".  I don't know how he didn't have it memorized.  He would drive my mom crazy with, "she still loves me, my betroved".  

I believe they came back in each others lives because of my diagnosis.  And they never stopped truly loving each other. And finally, my first bit of good news about my tumors shrinking came in December 2014 over the holidays.  My dad never took his tree down after that news.  He said it would stay up until I beat this.

The most recent scan I got showed no tumors or bright lights, and my SUV level was at 1.8.   Above 2.0 is indicative of cancer.  He was supposed to be here for that news.  He would've been elated, yet he passed away worrying about me like always.  I finally took down his tree and donated it to a 2nd grade class.  He would've wanted to still bring love to all of those children.  It was ironic that Karley was in that grade when I was diagnosed.

THE GRIEF MAKES YOU CRAZY WITHOUT SUPPORT

Psychologists have nailed it when it comes to grief and the stages.  It's only as if the stages never end.  They make you feel crazy.  Every case is different.  In my case I've just wanted support.  Friends to acknowledge my loss and check on me.  But I know it's the holidays and everyone is busy, but a few people I consider dear friends don't understand my need to be surrounded by love right now.  

I know I have the support from my mom who is sick 5 hours away and my sister in San Diego, but they aren't processing it the same way.  My mom has been so sick and my sister has two little ones.  I remember it being all about Karley in that way too.  It would have been a great distraction.

But shes on vacation with her boyfriend now and next Christmas she will be a senior.]

So for the first time in my entire life, I am alone for Christmas and New Years.  I felt like I had friends that would be supportive.  I'm not talk about Amanda and the ones that have always been there.  I needed a distraction from today.  But I'm not getting one so am about to go back to sleep.

I  suffer already suffer from PTSD which makes the loss harder, and the fact I talked to him the night he died.

When a parent dies unexpectedly , you tend remain in anger and denial longer, often leading to major depressive disorder or PTSD.  And having those already is like a walking bombshell.  It increase them.

And then some of your "friends" make you feel crazy.  They haven't suffered this loss yet though so how can they judge the way I'm my processing.  In reality, they cant understand and call me petty and dramatic and other many other things.  

But this isn't true, losing a parent so close can make you feel crazy  One minute you're happy and the next sad and the next angry.  And you can only pray to have the support you need.  Especially over the holidays.  I did so good until now.  Because tomorrow, my dad will have not existed in that year.  I feel like I'm leaving him behind.  It's an awful feeling.  Though a part of me will always be with him and him with me, I can't help but feeling this way.  

So, I'm not celebrating.  I'm sleeping.  And maybe I'll see him again one last time this year.  There are no rules on how to grieve.  But having support is so important.   When you don't, you feel like things are spiraling out of control and you are helpless.