My sweet angel

My sweet angel

Tuesday, September 20, 2016

Crazy Frozen

Ok, well I really tried to pull myself out of this funk but it may take more than just me.   At least I got out and now have a regular Thursday lunch date.  Thanks Brandy!

In all reality, it feels like I've been frozen in time since 11/27/12.  I see Karley growing up and everything going on around me, but I don't feel like I'm a part of it.  I don't feel like I've aged, although I may look it!  LOL.  I feel stuck.  Hard to explain.  So, of course I'm always sensitive when I feel like I'm missing out on things.

And the grief...just when you think it's gone, it's back.  It won't leave me alone!  I'm going to see a specialist about this.  I don't know whether it was the cancer bond Roy and I had or just Roy being Roy that I miss so terribly.  Maybe both.  It hurts so much.  And just when I think I'm okay, something triggers it all over again and I relive that day in pieces.  Some days I don't get out of bed and feel like I'm slowly falling apart.

I started a journal for more private things going on in my life.  It's helped a lot.  Such a release of emotions and something to leave for Karley, so she knows what was going on in my crazy head.

Please don't worry about me, I am fine, just a little broken.

Thank you all for your continuous prayers, I need them.  Especially that first week in October.  Don't take pity either.  I've been living with this for 4 years almost.  I think the longer we live with it, the harder it gets though.  I think year two was my best.

Well, love you all and thanks for reading me whine once again.  And please pray for a few of my other friends who I'm sure don't want their names mentioned, going through some life changing issues.  Thank you.






Saturday, September 10, 2016

Ignorance is Bliss

Hi all.  It's been a while since my last update.

This is the first time since diagnosis I haven't done the Free to Breathe 5K.  I just have been pushing myself further away from the cancer world.  I'm not meaning too.  Maybe it's part of coping. I'm just so freakin tired of dealing with it.  Living your life not on your own terms is miserable.  I don't have just me.....I have Karley, Brent, Livi, and John to think of and what will become of their futures.   

In a way though, the backing off from the cancer world has been good for me.  I feel more normal (except my hair).  My stomach has been upset for a few days...another wonderful side effect that seems to come and go.

I got my puppy.  We named him Data..pronounced "Da da".  I named him after Roy.  This little puppy has helped me so much not feel so lonely.  Even in a room full of people, you can feel alone.

Living in the cancer world, you lose people, friends you've made.  But not living in it, you feel like no one really gets what you're going through, especially emotionally.  I can put a smile on, no probs.  But underneath it all, unless I'm out doing something crazy or with the family, there usually isn't that smile inside....  It's a catch 22.  What do you do?

Well, I've been pondering that for the past month.  I realized I just needed a  break.  I'm back.  I'm ready to advocate the shit out of lung cancer, all cancers for that matter, but the number one killer is at the top of my priority list.  I'm going to find that face for lung cancer, that star.   And if I don't do it in time, I am sure that my friends and family will continue to advocate.   Stop the stigma of lung cancer.

Look for Karley, Data, and I in the September 26th issue of Woman's World.  I haven't seen it yet but we took tons of pics.  Thank you Lung Force for making that possible and all of these interviews a reality.  And thank you Bonnie J Addario foundation for making me a part of your committee to help advocate.  And Team Draft, Chris Draft, for all you do for patients all over.  And you're crazy cause you're going over the edge of the Buckhead Tower today.  We love your crazy.  And Lungevity, Free to Breathe, and the ALA for all they do.  So many advocates.

Jessica Steinberg, I'm so jealous of you on stage with Bradley Cooper last night on Stand Up 2 Cancer.  If you didn't watch it, I encourage you too.  At least the first part.  I cried my eyes out in memory of the people I've lost and my own trauma.  There is a lot going on in the area of research for lung cancer, which gives me so much hope.

Well, that's all for now.  Scans are the first week in October.  I'm going to give that worry to God and enjoy this time.  Like they say, ignorance is bliss.  And I'm always thankful for the 3 months of bliss I have between scans.  We are doing the annual brain MRI along with the PetScan so prayers would be so much appreciated.  And thank you for continuing to pray, this is never ending, so I may always need them.




Sweet Data

Lucky Jessica


Thursday, August 11, 2016

Changes

"The secret of change is to focus all of your energy, not on fighting the old, but on building the new."- Socrates

A lot of changes have taken place in the last month.  Roy left us suddenly and unexpectedly.  Karley started middle school today.  I can't believe my child is no longer so little.  She also left karate to focus more on volleyball, which she loves.  I'm sure these things are going to be adjustments, but she's strong and adapts so well to change.

I, on the other hand, am having trouble adapting to these changes.  So many changes.  I am learning to build on the new.  I know I've been doing less advocating lately.  I just haven't had the drive or motivation.  I am here by myself a lot during the day, which is not always fun.  So, tomorrow we're getting a puppy!  I'm so excited.  I love my cats but they are not cuddly creatures.

I lost a lot of my drive and motivation July 14th.  I'm working hard on getting it back.  I'm working on letting go of the past.  Always a place in my heart, but I can't continue to focus on it every day.  I need to work on building the new for now.

Thank you for all of your continuous prayers for my friends and family and for me.  I know things could always be worse.  I continue to be thankful for what God has given me.  I know this sadness is not permanent, and for that I'm thankful.

God bless you all.




Saturday, July 30, 2016

Broken

So, last night I finally broke.  I was strong for so long,  14 days to be exact.  But I had the girls with me and Brent with me or family in Atlanta.  But last night was different. Karley was at her dad's, which was a good thing considering my state of mind.  Livi and Brent had fallen asleep, like tonight, and it was just me and my thoughts.

As I lay in bed I thought of that day that changed everything.  All the "should haves and could haves" which in the end really wouldn't have mattered much I don't think.

July 14, 2016, I lost the one person I was so close to and could talk about anything cancer related to.  We talked about detachment from loved ones to spare them, fear, anger, sadness, anxiety about the future, confusion on how we should live our lives at this point and how to live them.  It was sudden.  It was unexpected.  And for the first time since I was diagnosed, I realized it broke me.  I didn't realize the severity until last night.

While everyone was sleeping, I replayed that fateful day in my head over and over and it wouldn't stop.  I have been working some in the house Roy lived in to get it ready for another tenant but it smells like him, I look down the hallway and see him there.  I know this has to be rough for Amp too.

I had to help the paramedic that day because the other paramedic couldn't stand the smell of vomit....uhmmmm choose another career field lady.  

I think Roy was confused during his brief moments of consciousness until he realized Amp and I were there.  Then he quit worrying.  It's like he just went to sleep.  I could see the recognition and will forever be grateful for that part.  He knew he wasn't alone.

I say I was finally broken because last night I was.  I was strong for my family, Roy's family and friends, and speaking about our bond and that day at the funeral.  Occasionally tearing up, but fighting it back.  Last night was different.  I facebook messaged him and began to cry uncontrollably.  I think subconsciously I was waiting for Karley not to be here.  I could not stop crying for hours.  I vomited several times and sat in the cold dark bathroom trying not to wake anyone.  I am definitely broken right now and it's going to take quite some time to put myself together.  

I told Brent I can no longer go to the rental house.  It's too much for me.  I'm taking xanax for the anxiety but it only lasts so long.  

Roy was my cancer partner.  He was one of my best friends.  We always came to each other for advice (ok he came to me more than me him) but still.  He gave me another purpose in life. In fact, I can't pretend to imagine what Miss Ola, Renesha and her sisters are going through, along with his very closest friends.  

I just know from my point of view, I will never be the same.  There is a hole in my heart that can never be filled, it will always belong to him.  Some as the question, "Is it better to have loved and lost than to never have loved at all?"  I believe the answer to that question is that it's better to have loved and lost.  It makes you human, it makes you feel.  

I will eventually be fine, I have my family to take care of, but I don't remember ever being this upset over the loss of someone....ever. 

Rest in Paradise Roy.  I'm crying tonight again and wish you were here to make me laugh by telling a dumb joke or something.  I can't wait to see you again....but I want to watch my girl grow up first.

P.S. we had your Roy Rooftop Relaxer tonight....good job my friend!  Love you.

Please pray for Roy and his family.

This is one of my favorite pictures of him

Roy working so hard at my wedding.   Love


Roy taught me cancer cards don't get you out of all trouble.

Our attempt at an "R" or it can be a cancer ribbon....either way







Thursday, July 14, 2016

Even the Best Fall Down Sometimes

I heard this song today.  It reminded me of the past few days that have been the worst since I was diagnosed myself.  In fact, they are about equal.

"I'm open, you're closed
Where I follow, you'll go
I worry I won't see your face
Light up again

Even the best fall down sometimes" - Howie Day

Although I know, I will see your face light up again, but I'm not sure when.  Roy Reynolds AKA dada AKA Robertson gained his wings today.  Roy was the kind of person whose smile could wipe away all of your worries.  He was so silly and loved to debate with me over so many things.

When he got diagnosed with leukemia over a year ago.  I went to the hospital almost every day to sit with him.  He didn't want to believe he had cancer.  He was in such denial.  Every day, I tried to drill it into his head.  That's the thing about Roy, he could be stubborn.

Shortly after being released, he moved in across the street from us.  Karley and Livi absolutely adored him.  He was the best tenant and friend anyone could ask for.  He was always helping us and never asked for anything in return.  I was blessed to work with Roy and be his friend for several years.

When he got leukemia, we held a fundraiser for him at Ocean Lodge.  He didn't realize how tired the medicine would make him or the side effects that took place.  He hated them.  He didn't want to really grasp that he was going to be on this medicine forever.   I told him again and again he was my cancer buddy down here and he had to keep the medicine going.

Yesterday morning his sister, Renesha and I took him to the ER for pain.  He had been to the ER several days in a row and they wouldn't admit him.  His gums were bleeding, his nose had been bleeding, and the pain was almost unbearable.

After the ER where he was just given more pain meds and released, Roy and I went to Wendy's.  He, being Roy, tried to pay for my lunch.  I threw his money back at him and told him, "Next time I have to go to the hospital and you have to take me, you can buy me lunch".  With that perfect smile he just laughed and thanked me.

I dropped him off at his house at 12:45, we told each other we loved each other like normal, we knew cancer.  Those were the last words we ever said to each other.

I arrived home around 6 p.m. last evening.  A family friend had found him unresponsive at his home.  We called 911.  He looked at me once, closed his eyes, and I never saw him open them again.  I had no idea what was going on.  I put a pillow under his head and stroked his head telling him it would be okay.  I was so wrong.

The ambulance arrived and he was still unresponsive.  His pupils were normal on the scene, but something happened on the way to the hospital.  I feel so guilty.  I don't know how long he was laying there.  My friend  was laying right across the street, bleeding into his brain with no one to help him.

The hospital here decided the trauma to the brain was too extensive so they air lifted him to Savannah Memorial.  I spent the night in Savannah and went back this morning.  He had no brain activity.  It was decided to take him off life support.

This happened so quickly.  One minute one of my greatest friends down here is okay and the next he's gone.  The girls are devastated, his family and friends are devastated.  I hope he knew how much he was loved by all of us.  Roy was one of a kind, always willing to help someone, never holding ill will.  I really thought that he would live longer than me.  Once again, I was wrong.

Roy, I'm sorry I didn't check on you more.  I'm sorry for not being the friend I should have been.

Please pray for Renesha, his mom, his family, his children, and his friends.  The world lost a great one today, one of the best.  He can never be replaced and will always be in my heart.  Love you Robertson.






Friday, June 17, 2016

Results 6/17/16

Hi All!

Thanks for being so patient today.  I didn't get my nap during my petscan FOR THE FIRST TIME EVER, so I had to get home and get one.

First, I would love to thank Healthline for naming my blog as one of the top 10 lung cancer blogs for the second year in a row.  It's such an honor!  You can read many others by clicking the link for "Healthline".

So, this is going to be short and sweet.  God is so good!  My scans not only came back showing no active cancer, but my oncologist said the area radiated in 2013 is starting to clear up.  I did have to do a pulse ox test because I had some trouble breathing last night, but I blame that on anxiety.  The longer I'm on Tarceva, the more anxious I get that it will quit working.  I've been on it since January 2013!  I am really good at handing that worry over to God, but last night I felt like I couldn't.  He showed me!

I took a few pics so you could see the crazy petscan contrast workings and my "official report" since the scan was done a few hours apart from my appointment time.

Thank you for your continuous prayers.  I am so grateful that I cannot express in words how immensely blessed I am.

We will be in Atlanta until Sunday as Karley and Livi are participating in the Battle of Atlanta karate tournament tomorrow.  I'm praying for them both.  Mama worries when they spar (by "they" I mean all of the GIMAA kids for those who over analyzed this sentence. I'm not trying to take away people's children). It's hard to watch.

Once again, God bless you all, and please keep all of the people involved in the Orlando tragedy in your prayers.  Life is so unpredictable.  Hold your loved ones close.  Tomorrow is never promised for any of us, not even me.  Finally, thank you God for this time you continue to bless me with and all of the family and friends that so graciously lift me up in their prayers to you.  Amen!


Excited about my nap that never came in the quiet room...



My "official" report since I always want it in writing.  My oncologist loves me!

Someone else was tired too

Tuesday, June 14, 2016

Snap back to reality, Oh there goes gravity....

Thanks to my mom's friend Glenda and all that donated to our wedding, we were able to take a fabulous 8 day honeymoon to London and Paris.  Those of you who are my friends on facebook, sorry for the photo overload. I just wanted to remember every moment. Those were two places on my bucket list I can now check off.  We had a wonderful time, taking in all of the architecture and culture.  It made me forget about cancer, doctors, time...  I was immersed in the present, breathing in the beauty of it all (Except when we got to Paris and I was breathing in garbage since the workers were on strike).  But the shopkeepers tried to move it all to buildings that weren't in use to keep customers coming in.

We saw all of the major sites we wanted.  Brent got to walk down Abbey Road and I got to go to the Louvre.  We saw Notre Dame and even lit a candle while praying everything would be okay, and the cancer would not take me.  That's about the only time I thought about it, maybe because it was such an amazing church.  We took bus tours and were total tourists, it was great.  I'm sure most of you have seen all of the pics, but for those who haven't, I'm going to add some of my favorites below.

Now we are back to reality.  I have scans and results this Friday so will be heading  back to Atlanta Thursday.  It was so nice not to worry or think about this hand we've been dealt and just be.  But, now is the time I have to give it to God.  It's in His hands. I will update you all on Friday.

Thank you all for your continuous and relentless prayers.  Please keep them coming, we appreciate them so much.  And we are all praying for the victims and families of the Pulse Nightclub Orlando massacre.  No matter what the motive was, this was a senseless tragedy.  I can't even watch without crying.  Life can change, or end, for you or your loved ones at any moment.  Hold them close, tell them they are loved, because tomorrow is not promised to anyone.






Buckingham Palace

This statue means "Anything is Possible".  It was my favorite.


Lighting my candle at Notre Dame

The Candle

Locks of Love


Louvre

Our room in Paris