Roller coasters

It's been a while since my last post.  I was in a funk for a bit but things have been looking up.  I know I go back and forth, but it's just part of this roller coaster grieving process.

Since my last post, I've seen a counselor regarding Karley's nighttime behavior.  A month or so ago she began waking up and crying and night, sleepwalking too.  She would cry for me and no matter how many times I put her back in her bed she would not remain there.  I eventually gave in and let her sleep with me.  This continued until now, she just routinely sleeps with me.  The counselor let me know this was okay, and maybe she was feeling some abandonment issues due to my recent bout with depression and distance.

Wow, what a wake up call!   It made sense.  She will not sleep unless she is somehow touching me.  I don't want her to feel abandoned or "leave her before I leave her".  She is the most important thing on this earth to me and I felt so guilty for making her feel this way.  Since this meeting, I've been slowly but surely enjoying every moment with her more.  I love her more than words can say.

My best friend, Amanda, along with her children, Ashleigh and Connor, came down to visit this past weekend.  We had a blast!  Although Ashleigh is old enough to watch Karley and Connor, I wanted to be at home with the kids instead of going out.  I love Amanda for being such a great friend, so honest and blunt with me.  We did have one girl's night out, but it wasn't a late one.  It rained a lot, but it didn't ruin our good time.  We even made a trip to Jacksonville for some laser tag.  I've attached a few pictures from the weekend.

I'm so blessed to have this time with my sweet angel and wonderful friends.  I haven't laughed so hard in a long time.  Life is so precious and we take so much for granted.

On another note, my family and friends are participating in the Free to Breathe Atlanta 5k on August 17th in the Vinings area.  If you would like to join us, here is the link to our team page http://participate.freetobreathe.org/goto/Team_Clayco

Thank you all for your continuous prayers and support!  Please continue to pray for Reggie, Tim, Marjorie, and Gretchen!

Miracles happen.

My favorite verse:
Matthew 19:26 NIV
Jesus looked at them and said, "With man this is impossible, but with God all things are possible."

Stages....

Ok, so I know that so many people have it worse than me.   Really, they do.   The problem, maybe I'm selfish.  It's been 7 months since I was diagnosed.  In that 7 months, I've been through every stage of grief except acceptance.   I think in the beginning my denial and isolation was indicated by the fact that I was so positive but didn't want to talk about it.   Without my hair falling out and the short period of time, it wasn't real.  I was going to be fine.  I would get rid of the cancer and move on.

Then came the anger.   I was angry that this happened to me.   I was angry, that chances are, I will not get to see Karley graduate from high school or get married, maybe even date.   That is devastating.   I brought this beautiful, wonderful person into the world, took care of her every day, and now, I can't even be around her when she is sick.  What kind of mother am I?  I can't be there for her when she is sick.   I was angry for a long time.  I can't say I'm not still angry about it.

After the anger came the bargaining.   I thought, maybe if I got a second opinion, I could get better.   Or if I were a better person, things would be different.  Somehow I was going to be okay.   I think bargaining and denial are a lot alike.

Finally, acceptance.   I think I'm getting there.   I've realized this disease is not going anywhere until there is a cure.   I'm not going to live long if there is no cure.   This terrible mutation and has taken over my life.  I can't think of much more every single day.

I live on an island.   I'm not supposed to be in the sun.  Yet, I live on an island!  Everyone here is on vacation or the locals live at the beach.   There isn't much to do but the pool and the beach.   So, how fun of a mom am I now?   I can't be fun and I can't be a good caretaker.  

Please don't tell me to stay positive or keep my head up.   I had to vent tonight, and at the age I am, with this prognosis, I have a right.   Everyone says, "just keep hanging on, maybe there will be a cure".   Well, there isn't one yet.   I hope there may be one in the future, but as of now, my future looks very dire.   I'm tired of crying and trying all that I can to pull myself out of this funk.   I'm just not sure that I can right now.  I have to have more time to wallow.   I'm living in a world that is full of life, I just don't feel like I'm a part of the living right now, yet I'm not dead.   It's the worst feeling in the world.  

I hope you all can understand, please continue your prayers for my friends (Reggie, Marjorie, Gretchen, Tim, and Courtney) and me.   I may be throwing a pity party for a bit, but I still need them.   I don't want to give up hope.  

Results 6/21/13

I had my petscan yesterday to determine where we are at with treatment. This is the first petscan I've had since December, which was pre-treatment.

The good news - my tumors continue to shrink. The main tumor has reduced from 4 cm to 1.3 x 1.1 since December. One tumor has remained unchanged though. We are still blessed for the continued improvement.

However, there is persistent hypermetabolic neoplastic disease at the site of the main tumor. This indicates the cancer is still very active.  I've had a cold for a few days and there was inflammation in another node under my right arm but it's believed to be from the cold.

There is something I want all of you to know about the type of lung cancer I have, in case I haven't explained it before...

An EGFR mutation is an irreversible cell mutation that has become a normal part of my DNA. My body does not recognize it as bad, so the immune system does not fight it.  Therefore, the bad cells keep multiplying. Tarceva, the medication I take daily, inhibits these bad cells from multiplying. For how long? We don't know. Cancer is smart, and it can find a way around this inhibitor. If and when that happens, we try something else.

The fact is, this mutation is not going away. There is no cure. We are just trying to stop it from getting worse. Even if the Tarceva leads to "no evidence of disease", I will continue taking it for the rest of my life.   If/when it quits working, the cancer will return.

We need a cure. I'm blessed to have this pill that will help extend my life, but without a cure for the mutation, it just prolongs the inevitable.

I understand, it is inevitable that we will all die. It could be in a car accident, plane crash, instantaneously. Or, you could know its coming. I am reminded everyday with a pill. Which would you pick if you had a choice?

I know I'm usually upbeat, but this is how I feel at the moment and expressing my feelings is what this blog is all about. Documenting the journey, keeping my faith.

That being said, I am thankful for the time I have and will continue to have. Some days are just harder than others. It could be worse for me, so sometimes I feel selfish even thinking this way.

Thank you all for your continuous prayers and support.  They are helping so much.  Please continue to pray for Gretchen, Marjorie, Tim, and Reggie.  They each are fighting their own different battles.

I spent some time with Reggie yesterday.  He's lost a lot of weight and is very tired.  He won't know how well the radiation is working until it's over.   He hasn't been working very much so Brad began a fundraiser site for him, to help with medical bills and to compensate for missed work, just click here to go to his site:  Reggie's Fundraiser

God has a plan for all of us, even though it may not make sense now. I continue to Hope for that cure, you can't have Faith without Hope!

Jeremiah 29:11
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

Catching up

I know it's been a while since my last blog.  I've been in sort of a "blah" state I guess you could say.  I went to a psychiatrist for the second time since being diagnosed.  She was amazed I hadn't seen anyone since January at MD Anderson.   I'm not that big of a talker, pretty sure therapy isn't my thing.  Other than that, things are basically the same for me for now.

Since my last posting, my friends threw a fundraiser at Taco Mac for me.  I'll add some pictures to the end of the event.   I just want to thank Taco Mac, Phillips Arena, Lisa Durham, Reggie Kimbell, Ron Terrell, Poppy Patterson, Amanda Davis, Jessica Jefferies,  Brad & Mandy Busch, and Summer & Wes Bayer for all helping make this fundraiser so successful.   We raised over $5000!   Oh, I almost forgot the kids.   Karley and Maddie were on top of things all night too.   They were awesome.  So many friends and family came out and donated so much money.  I can't thank every single person that came out individually, but know that I appreciate it more than you can imagine.  It has helped us so much.   You all make me feel truly blessed!

Also, thank you so much to the attorneys and staff at Arnall, Golden, and Gregory for raising so much money for me within a few short days.  God bless you guys!

Please keep your prayers coming for Reggie.  He began radiation last week and is doing well but I know he's tired.

Our new friend Marjorie came out to the fundraiser for a bit.  She's got a battle on her hands as well and I can only hope we can do some type of fundraiser for her too.   She's such a great person and very determined to beat this cancer!  We will continue to keep her in our prayers!

Also, please pray for Gretchen Mitchell, another fellow JHS classmate and friend that has her own battle ahead of her.   She needs our support and prayers right now!

Finally, please continue praying for Tim as he continues to improve.

Thank you all for all your support and prayers!  Remember, life is short and can change in an instant.  None of us expected these cards, but it's what we were dealt.   Keep that in mind when you're with your loved ones.  Hold them close, you never know....

Jeremiah 29:11-13

'For I know the plans that I have for you,' declares the LORD, 'plans for welfare and not for calamity to give you a future and a hope.   'Then you will call upon Me and come and pray to Me, and I will listen to you.  'And you will seek Me and find Me, when you search for Me with all your heart.'

Results 5/10/13

I apologize for not updating yesterday, I was exhausted from being at Piedmont all day.  My MRI is still clear and my lung tumors are still shrinking (according to the chest x-ray), praise the Lord!   I still will go for an MRI every 3 months but don't have to see Dr. Chandler, he can call me with the results.  I will go back in 6 weeks for a PetScan and to the oncologist to see where we really are.  Chest x-rays don't show that much detail.

He also let me know that I will be on Tarceva for the rest of my life, unless it quits working.  I am so thankful for these pills even though the side effects are not great.  I'm praying for a cure to this horrible disease!

I met a very brave woman, Marjorie, while waiting on my MRI.  I found out she went to high school on the same side of town I did and is only a year older than I am.   She is not getting good results from her meds right now.   She has a different type of cancer but is also stage IV with two children.  She needs our prayers for strength and healing!

Finally, my old friend Reggie had his voice surgery this week and is wasting no time using it.  I love him!  MD Anderson suggested fractionated radiation (which is radiation every day for 6 weeks) so he is going to Emory next week to see if they can do it there.  He's still got a long road but your prayers are helping both of us!

Mark 11:24

"Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours."

Giants

So, I know it's been a while since my last blog.  I apologize.  I was so busy with appointments and catching up from being away, until about two weeks ago.  Then, I got caught up and now have had time to think.  That's not a good thing right now.

My hair is coming out in clumps now and my eyes have been very dry and that's rough.   There's no stopping it and I feel so vain for being upset about it.  It was tough accepting my diagnosis when I first began this journey and I know I'm going to stumble and have some roadblocks, it's just very hard to stay positive all of the time.  I know God has a plan, it's just difficult to be such a logical person yet refrain from trying to understand what that plan is.

My next appointments are on May 10th and I'm very much praying the results keep getting better.  I'm so blessed for all of my friends, family, and prayer warriors that have been here for me.  I hope you all know how much your prayers mean.

I heard a great saying in church Sunday: "keep your focus on God and the giants will crumble, if you focus on the giants, then you will stumble".

Cancer is my giant.  But God is bigger than cancer...

Please keep up your prayers for Reggie and Tim too. They need them just as much!

God bless you all!

John 16:33
"These things I have spoken to you, that in Me you may have peace.  In the world you will have tribulation, but take courage; I have overcome the world."

Overcoming

As most of you know, Reggie has a tough battle going on himself.   He decided, before going through a complicated surgery, he wanted to go to L.A. again.   Since my schedule was pretty open, I went with him (thanks to my sister's flying privileges and his mom's hotel connections).

It was a great trip.  We went everywhere....here are a few pictures from the trip:

We got back from L.A. and all of a sudden it's spring break!  Amanda and the kids came to St. Simons to visit.

It was a great time!   Now I'm in Atlanta and just had an ultrasound of my pelvic cyst.  We've decided to keep watching it.  If it keeps growing or staying the same, we may have to remove my ovaries, which will send me into menopause with no hormone therapy.  OH NO!!!!  Anyways, I thank God it's not more cancer!

Meanwhile, Reggie had the same bad news and considering a second opinion at MD Anderson or John Hopkins.  His face, more than likely, may be paralyzed and require a feeding tube based on the news he received at Emory.   He has a very complicated surgery that lasts two days to look forward to, along with several months at a rehab center.  He desperately needs our prayers, for both strength and healing.

Thank you all for your continuous prayers and support!  My next scans are May 10th to see what progress has been made with the Tarceva.   I will probably update before then with update on Reggie though.

Psalm 107:19-21
Then they cried to the LORD in their trouble, and he saved them from their distress.   He sent forth his word and healed them, he rescued them from the grave.  Let them give thanks to the LORD for his unfailing love and his wonderful deeds of men.