Saturday, September 28, 2019

Results of the Cautiously Optimistic

I went in for my results yesterday.  As with the other radiation I've had to my lung, it's very cloudy and sometimes we aren't able to fully tell anything for months to a year.  We are going to try to keep me on petscans so we can find anything growing, but you know insurance companies...

So, nothing lit up on my new pet scan, which is nothing short of the work of God!  I feel so blessed that he continues to lead my oncologist into making the right decisions for me.  So, what does this mean?  It means they found no active cancer!  I say cautiously optimistic because the cloud is there, but I'll take that win!

We've started joking around that my father and I have cockroach DNA.  I know, sounds supergross, but we get knocked down and get back up and keep on going.  I'm not sure how many lives we are on now.  So, cockroach DNA for the win this time!

I do give it all to God  There is a reason I'm still here as well as my wonderful parents.  I trust in his reasoning wholeheartedly.  I may have had a few anxiety attacks...but I have kept the faith. 

When I was packing, one of Karley's cats had his own anxiety attack and ran away.  He was gone for two days and the worrying about that along with scans was making me nuts.  But early, the morning of my scan results, my dear friend Jennifer called to let me know he came home.  I was overjoyed, and it was then, I knew it would be a good day.  Pics below, the orange one was missing and his sister was either trying to scare him from coming back or waiting on him.  I'm not sure.

My next scan will be in December.  At that point I will have surpassed 7 years on my first line treatment of tarceva.  We've had some bumps in the road but have been coming out on top each time.  I ask you all to continue to pray that I keep going, especially for my daughter.  Statistics are still not good and I continue to surpass them.

Please pray for my four friends from Jonesboro High School who also have cancer, we started our own group chat. 

I met Angela Miller for lunch.  Let me just say you are in for a real treat if you try holding a conversation with either of us.  We forget words, get confused on topics of discussion, forget in an instant what we are saying.  It did make me laugh longer than I have in a while though.  I hate she's going through this too but I't makes me feel a little better that I'm not a mess by myself.   Please pray for her, she has 3 little ones she loves so much.  I know how hard it is to have your world turn upside down.  Its devastating. 

My dearest friend in St. Simons recently got diagnosed with breast cancer.  Honestly....it's not contagious!  I swear I'm not giving it to people! 

As for now, I will live these 3 months and put cancer in the back of my mind once again.  Between it's return and then pneumonia, I haven't felt well since probably April.  I'm now breathing better and so glad we recognized the pneumonia.  I may be still tired from that...but I will so be back to the silliness that makes me whole very soon.

I love you all and cannot thank you enough for all the well wishes and prayers that you guys sent for me.  I'm always here for you if you need anything.  God bless you all.  And here are a few pics below.  Please enjoy the ones I stole from my daughters Instagram page!  Homecoming 2019!  Oh, and one more from NYC with the world trade center in the back....

Monday, September 23, 2019

I Thought I was Back

Since the end of July, I have been so sickly.  I was tired all the time and it took all I could to do anything.  I wasn't able to help my old boss much in August, I kept getting worse to the point I was exhibit A below most of the time.

We went to a Peer Medical Event in NYC promoting Lung Force.  Both are amazing groups, and if you haven't signed up for peer medical and are egfr, it's still in the trial stages but is an amazing gift to us.  Email me if you're interested and I'll pass along your info.  It's a great source for finding people like yourself and comparing and discussing treatments, anonymously of course unless you send a request and the other person accepts.

While there, I spent most of my time sleeping.  We had a mandatory evacuation for the recent hurricane so changed our flight to go out of atlanta.  I made the trip up with my daughter.  We went to NYC and that's when I started to realize it was something more than just fatigue.

After getting home I spent a week at my mother's.  I was so sick, my immune system shot from radiation.  Josh took Karley home for me and I stayed.  Luckily my friend Jennifer didn't mind watching my carsick dog and my dad our to old cats. 

After about a week I knew I had to go home, I missed my baby so much.  John and Meghann were great keeping her and getting her ready for home coming.  After about a week of being home, I finally rolled myself out of bed, put on shoes, and went to the doctor.  I had only been out of the house a handful of times since July.  I was (and still am) getting so confused over following directions and remembering things.  I would like to say it's my age, but these are simple words I can't come up with.  I know it drives my friends crazy.  Please be patient with me.  I forget everything.

After doing a chest x-ray and sputnum test, I discovered I had radiation induced pneumonia.  All those months I was sleeping.  I shouldn't have been so hard headed and gone.  This type of pneumonia, like others, can kill you if you don't eventually do something about it.

So, I'm finishing the last of my medication and starting to feel so much better.  I feel like the last 3 months have been a blur.  I guess too much sleep?  And my lack of being able to remember anything has led to a severe decline in the writing I do on the side for extra money.

Anyway, It's scan week and an as usual, I'm a little worried of something lighting up.  Maybe a little more worried than normal since these are the first scans since my cancer returned.  I'm back to PetScans for now to look for active cancer.  I don't mind them, but I do mind the sleepless nights ahead.  I will know on Friday if it worked hopefully.  Sometimes it's hard to tell.

I'm just so tired of being tired.  Your prayers have kept me going past the average survival rate, so please don't give up on me.  I get knocked down, but I've always gotten back up.

During all of this, I lost a dear friend, Terry Karlstad.  It's been pretty devastating. His wife, Sorina, has been such an angel on earth and I'm praying for her and all of Terry's family.  I remember when he began messaging me that it came back and it had been 18 years of dealing with it.  He was tired.  We tried to have lunch together but he was in the hospital so I had lunch there with the idea we would go somewhere when he got out.  He never got well enough.  His death really hurt, not just me, but the entire lung cancer community as well.  I miss this man who always reminded me he loved me and always called me Kiddo.  When he wanted off social media, he would go silent but he told me he was tired.  I know he had to be.  We go through so much, sometimes it's just too much.  That man held on for so long.  I know he's in a better place, I just miss the hell out of him.

Well, in other news, Karley had her first homecoming and got to play for the varsity team in volleyball.  She's growing up so fast, I don't want to miss a minute but feel like I've been very boring lately.  I'll add some pics below.

But as of now, please pray these scans go well.  I want to see my baby girl graduate high school and college and get married and have children.  I know it's a reach, but I'm reaching hard.

Also, please pray for my friends Angela and Chris, both recently diagnosed with separate cancers as well.  We all went to school together.  I feel like that place is cursed.

Anyway, I'll let you guys know about the scan results Friday.  I need as many prayers as possible.  Love you all and I'm so sorry it's taken so long to update.  God bless you guys.  And sorry for any grammatical errors, hoping this confusion and loss of words goes away soon.

Me over the Past 3 months basically

New York (I was exhausted but excited to be a part of helping this team)

Karley's First Varsity Game (courtesy of the Brunswick News)

 Karley's First Homecoming (courtesy of John and Meghann)

I can't believe we've come so far.  She was in 2nd grade when I was diagnosed.  Now she's a freshman in high school.  And I couldn't be more proud of this girl, the best thing I ever did.

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!