Friday, August 2, 2019

I'm Back

It's been about a month and a half since I got the news about my recurrence.  We radiated and it took a while to eat normal food again.  I've been very blessed to have some wonderful friends and family to help take care of me. 

I've mainly been resting since returning as I'm still getting fatigue and occasional nausea and vomiting out of no where.  But being back in my own bed, in my own home, has really taken some stress off. 

I got out and went to Karley's first high school scrimmage game against Camden County.  I'm so proud of the young lady she has become and am terrified at the fact that I only have 4 more years left until she goes to college. 

So, since I've been here, Jennifer and Norma Jean have come to visit.  Binge watching Lucifer has been our thing.  Now I've gotten Josh into it.  I must say, it is nothing like I expected by the name. 

They've cooked me food and just been lazy with me.  Which I so desperately needed. Karley stayed with me my first week back.  She was such a help when all I wanted to do was sleep.  Her dad bought her some dinner items she could fix on her own and she did so much for me and didn't argue at all.  Pretty great for a 14 year old!

I'm so happy we were able to catch this nodule and radiate although I won't know how well it worked for a few months.  I haven't developed any other mutations at this time though, so still on tarceva.

It was also the first anniversary of my soul sister Kelly Shannon leaving us to be in her eternal home.  She is loved by so many, I miss her so much but know we will be together again one day.

I just want to thank you all so very much for prayers for my friends and me.  Heaven did gain an angel friend this past week.  Rest in Paradise Samantha Valis.  It's been amazing to see so many give to her very young son.  She was only 29.  This cancer is a beast, a mountain lion.  Just praying we all can keep climbing that mountain. 

God bless you all and thank you Lord for this additional time here.

Samantha Valis

Kelly Shannon

My Bike

Tuesday, July 9, 2019

A Different Radiation

As most of you know, my cancer returned.  It's located right next to the heart and a major artery near the heart.  Therefore, a biopsy wasn't possible.

It was decided I needed Stereotactic Body Radiation Therapy (SBRT).  I've had this treatment before but it was in my lower lobe.  Now, it's in my upper lobe.  There is a world of difference when it comes to these two areas.

I can't totally remember what it felt like back then, but I can tell you about now.

My fatigue is out of control.  I went to bed around 4 pm yesterday and just had to use the restroom so thought I would catch everyone up.

So, my main concerns are the scratchiness I feel around my esophagus.  I can't seem to clear my throat and I'm afraid to try to hard since it's such a delicate area.   I'm finding comfort in warm soup and cold drinks.  My energy is so bad, I don't even feel like chewing.  But, at least I have an appetite so there's a silver lining.

Another side effect (or maybe it's just there again) are migraines.  Sometimes these headaches are unbearable.  I have pain medication but am having to ration it.  It would be such a crime for me to get addicted to pain killer since I literally have a cancer that is trying to kill me.  I mean really, give a girl a break and at least ease the pain.

I'm also having difficulty swallowing, nausea, and increased coughing.  I've also noticed my lung capacity isn't what it used to be.  And the very best part is the headaches.  Nothing says "you keep getting run over by the same dump truck" like these damn headaches.

I quit reading the side effects when they began describing "fatal bleeding".  Sometimes you just have to live in the "ignorance is bliss" state of mind and let God do the rest.

In other news, I was nominate for a few WEGO awards.  Two of them were nominations by someone else.  I, however, nominated myself for most hilarious patient, which is typical me and SO vain.  I may not be, but I think I have a shot.  I do have some stiff competition in the lung cancer world, with people like Terry Karlstad and Cliff Norton.  And Sharon girl, you totally get me.

In all honesty, I wouldn't be here if it weren't for God, Karley, and the ability to still laugh, even in the most dire of situations.  Some call it morbid, I call it reality with a twist.  I'm not going to let this cancer take away my sense of humor.  It takes so much as it is, I have some control over what it doesn't take.

In other news, my baby left and hopefully I will be reunited with her next weekend.  She was so sweet while here.  She would lay down and we would fall asleep together watching movies.  I miss her so much already and know she has to be worried about her "ma".  No idea where that child gets some of these things.

Anyway, I'm about to go back to sleep.  I haven't been up for company lately.  I would just fall asleep.  I'm not sure how long these side effects will last but I've had a few people offer to bring food when I get home.  Don't get me wrong, I'm a very prideful person, but sometimes it's okay to let people help you.  It makes them feel like they are helping and you feel less stressed.  There are angels here among us.  And if anyone wants to bring food until I can be myself again beginning next week in St Simons, your offer will not be declined in the least!

I can probably make a schedule or something when I'm not so tired.  I'll have to hand it to you radiation, you are kicking my ass this time.  Last time was so much easier.  I'm afraid I'll break something internally if I cough to hard.

Ok, enough rambling.  Here is the link to the WEGO site where I have the nominations from two amazing people, well 3 amazing people if we count my own nomination.  Probably don't deserve it right now because I'm miserable...but I did when I nominated myself for it.  Anywho, here is the link if you want to vote for me.  I think I get to go on a trip.  There are also ways to contact me on there if you need anything.  I never mind helping people as much as possible.

Samantha's WEGO Nominations

Thank you for your relentless prayers and please continue praying for me and so many of my lung cancer friends right now, Erin, Linnea and Terry especially.  It feels like a lot of long term survivors have hit a patch and are really skating on thin ice.  I discuss my future with my oncologist on Wednesday after radiation.  I will let you all know what's going on.

Thank you all for your support and God Bless you all.  Here are a few pics for this post.  I'm really digging my hair...and my sweet sleeping angel.  And almost forgot, we went on a safari before I started treatment.  Thank you Brad and Mandy for taking us.  We had so much fun!  Lots of pics and videos on my personal page.

Tuesday, June 25, 2019

Blood Biopsy Results

So, the results came in and I have no additional mutations.  I'm still just EGFR.  Therefore, after radiation, I will continue the course with tarceva. 

I'm meeting with my oncologist in two weeks to work on a future scan schedule and praying like crazy this spot was part of the original tumor that escaped and was just now detectable. 

Also praying for this radiation to go well.  It's in the same lung I had it done last time.  I'm praying that lung can withstand all of this and all goes well since there is a major artery too close to biopsy  the spot itself.

Prayers appreciated and thank you all for continuing to fight this journey with me.  I'll be getting the body cast made tomorrow and officially start my first round 7/1.  My independence day celebration is going to involve a lot of sleep!

Love you all and God Bless!

Tuesday, June 18, 2019

Plan A

So, I got the results of my Petscan an MRI back.  They both showed no additional active cancer.  So, the problem has resulted in what to do with this new area that can't be reached.

After consulting the cardio thoracic surgeon, the plan was made to just radiate that one area since it is the drainage area and could have been there all along, just too small to pick up.  We will get the results of the blood biopsy on the 26th.  If it shows no mutation, I'll have the radiation and stay on tarceva.

The radiation will be 5 rounds to the upper portion of my lung.  Next Wed., June 26th, I'll have my initial appointment and after that I'll have 3 rounds one week and 2 rounds another hopefully.  This will put me home mid-July which really sucks.

I love being with family but I miss Karley and my own bed and just my life.  So, there are a lot of logistics to work out.  I'll keep you all updated.

Thank you all for your continuous prayers and God Bless.

Friday, June 14, 2019

All Good Things Eventually End

Well, it's been a fabulous run on tarceva.  6 1/2 years in fact. Unfortunately the time has come to move on.  I just finished my appointment which showed progression in my lung that's hard to reach for a biopsy.

So, I'll be in Atlanta a little longer than anticipated.  I have a petscan and MRI scheduled for Monday to be sure there is no additional metastatic disease throughout.  My oncologist has a team that will discuss my case after these additional tests and determine where we go from here.  We are thinking tagrisso but are unsure for now.

I've been blessed to be progression free for so long.  But we all know this disease is relentless and the reality is, it will not stop.  I'm thankful to know so many advocates and physicians that I can get opinions from.  You guys know who you are. 

I know my family and friends are worried.  All I can say is that we cannot control our destiny.  It's in God's hands.  He has always given me signs, so I wasn't that surprised going in today.  I feel Nicole and Kelly were surrounding me with their love and comfort and God allowed that as a sort of warning.  They both did show up in my facebook memories this week.

But, whatever happens from here, I do feel confident that God will lead the doctors in the right direction and we come up with a good plan.  I'm praying it hasn't spread as well. 

So, for now, I'll have more tests Monday and will keep you all updated  now that things are different.  I miss my Karley so much and will be so happy when I get to go back home.  God bless you all and thank you for your continuous prayers.

Thursday, June 13, 2019

This Sucks

So, it's nearly 1 am.  My scan is tomorrow so I'll need to be up around 7:45 a.m.  I can't sleep.  This past week I've been sick, had pain below my right rib, and my memories on Facebook have been the last ones I have of both Nicole and Kelly. 

Those who follow my blog know who they are, but for those who don't, they were my two closest lung cancer friends who left us last year.  I was supposed to go visit Kelly last year at the end of June, but I got sick and her health kept declining. 

And I don't know how in the hell I'm supposed to deal with so much loss.  Kelly was my soul sister and Stephanie has surly joined that club now, they will love each other but never replace each other in my heart.  I thank God every day for Him sending Stephanie to me, even though it's selfish and she doesn't deserve this either.  She too has young ones.

No one deserves this.  No one deserves to live like this.  It's not just Kelly and Nicole who left.  It's Courtney, Ray, Chris, Karen, Molly, Mandi, Shermaine, Paul, Joan and so many more that left this world too damn soon.  They had children, some of them very young.

And I know I should be grateful to still be here, it is so damn hard to lose so many.  The ones I named are not even a 10th of the people that have gone on.  It's so hard talking to someone, knowing it's the end on earth for them.  And sometimes I don't reach out because I don't know what the hell to say.   But know this, I will always be here for you to talk too.  Just DM me on Facebook.  You're not alone feeling this way.

I'm living for my daughter.  Now she's a teenager and man, it is way more depressing because she's struggling for independence.  I remember that age.

So, for now, all I can do is cry for all of you out there that have lost someone, that are dealing with a this (both family and patient).  Know that I'm praying for you too.

Survivor's guilt sucks.  I've always felt God gives me signs.  So, both Nicole and Kelly showing up in my memories makes me a little uneasy. 

But once again, I'm going to say my prayers and have faith in whatever God has planned for me.  I'm both a pessimist and optimist of this disease.  It seems I'm never happy with the results, which is selfish too.  I really need to quit with the selfishness and turn things over to God.  It's harder than I make it seem sometimes.  But when I actually do it, a peace takes over that I can't explain.

God bless you all and thank you again for the prayers.  When I can't sleep..I write.  So I just laid it all out there for you.  Now that this is off my chest, maybe I can sleep. 

These are my people.  On earth and in heaven.  The emotional toll is the worst.