Back in Atlanta

So, I know it's early and I'll probably go back to sleep soon, but felt like blogging.  Yesterday was one of the hardest days thus far.   It's like they said, "Pack your bags, there's nothing we can do".

But, that's not it.  I understand that the cancer spread and is inoperable now, but after researching the medication I was put on (also advised by Mayo and approved by Piedmont) I am very comfortable with this outcome.

If I would have stayed, they were soon planning to remove the tumor in the right lung, I'm assuming, with all of the tests I was going through and had scheduled (but then cancelled after after the CT Scan results).  Quite frankly, my body is kind of tired of tests and surgeries so being given a pill that has a 70% chance of being effective at stopping the growth and possibly even regressing the cancer for a while, then I'm good with it.   The doctors explained it will one day become ineffective because my body will build up a tolerance, but by then, I can only pray that there will be another drug to try.

Who knows?  Maybe before I begin resisting it, it could regress the cancer so much, that maybe it won't be, "surgery isn't an option" but will be "there isn't anything to remove".   After all, the doctors words are not final, only God's word is final.  And, while waiting for the flight at the Houston Airport last night, I felt kinda good.  This pill is going to allow me to go home and work and live normally for a few weeks at a time (I will have follow ups every few weeks).

Right now I'm trying to decide between Piedmont, Mayo, and MD Anderson as my primary caretaker.  Mayo-close to SSI, Piedmont - saved my life originally and great docs/equipment, MD Anderson - Best in the country, but so far away from home (which made me really depressed) and put me on Tarceva (same as Mayo and Piedmont were going to do).  It's a tough decision, but I'm hoping the Lord will lead me to the right place.

Today is going to be a good day.  I'm almost home with Karley (will be by Friday or Saturday) but at least home in Atlanta.  I'm staying a few days in case I have a reaction to the new meds, Piedmont is very close.

I feel better today...I don't have control over this cancer.   It's not God's fault, it's Satan's way of making me doubt my faith.  There are some days that are hard, and I may come close, but I am not going to lose faith or hope.  I believe He is in control.  As hard as it is for me, and totally not in my nature, I need to just let go and let Him take care of things.  That is what faith is really all about anyways, right?

Matthew 19:26

In faith,

Sam

Final Day - MD Anderson

I woke up this morning expecting to see a pulmonary doc.   Instead, I got a call from my oncologists office.   They were canceling the rest of my appts and wanted me in her office at 11 am.  Yet, she was supposed to be off.

I had a feeling it wasn't a good sign, I was correct.   Apparently the CT scan showed the cancer was throughout both lungs.  The equipment was not able to pick up on it in Atlanta I guess because it was very small.

It's no longer localized so radiation or surgery are no longer options.

I'm beginning Tarceva today which has proven effective in stopping and sometimes regressing cancer in a majority of patients with my mutation.   My doc told me that it has a 2 yr. 50% survival rate.   However, it will quit working one day.   At that point, I pray the cancer will have  regressed enough to have surgery or radiation.

So, that's where we are.   I'm desperate to get out of here so am waiting for my prescriptions and can hopefully catch a flight back to Atlanta tonight.  I'm praying a cure can be found soon for this.   I have a follow up here 2/4/13 to see how the Tarceva is working.  

I'm trying to stay strong in my faith.  It's so hard with this news.   I'm sure God has a plan for me, and I will never ever stop fighting.   I can't wait to hold my little girl again.

It's just one of those bad days during this roller coaster of a fight.

 I'm very emotional and don't feel like talking much today.

Thank you for all your prayers and PLEASE keep them coming.   I need them.   Please keep Tim Gravitt in your prayers too.  We both have a huge fight on our hands!

Every day is a gift.   That's why I just want to go home now.

Love you all!

Matthew 19:26

Day 2 - MD Anderson

The rain today is making me soooo sleepy.   It's supposed to rain all day today and tomorrow.   Yay!

My first appt today was at 1:30 for another CT scan.  They were running way behind, but I did meet a woman who has been battling Stage IV lung cancer for 14 years, which was awesome!

After my CT Scan, I had a complete Pulmonary Function Test.   I passed with flying colors!   So, my breathing is normal.

Tomorrow I meet with a pulmanolagist and a counselor.   Apparently, I am depressed and need to seek some help.  But who wouldn't be in my situation?

I'm blessed to have some good friends out here who have hung out with me to take my mind off some things.

So, still no treatment plan or news.   Sorry for the short blog, I"m just a little sleepy and not much of an interesting day.  

Tomorrow may be better....I am seeing a shrink!!!!

Love you all!

Matthew 19:26

Day 1 - MD Anderson

I spent most of the night crying last night, being so far from home and missing Karley so much is getting to me.  There isn't much to do but think when you are sitting in a hotel room.   I also learned that an old high school friend had recently been diagnosed with cancer too.   Please keep Tim in your prayers as well.  We are so young, so we have a lot of fight!

So, on to MD Anderson, we arrived on time and everyone was so friendly, walking us to each area we needed to go.   We met some great people in each of the lobbies we waited in.  I even met a young 30 yr old mother of a 6 mth old boy with stage IV lung cancer as well.   It helped me hear other stories, knowing I'm not alone.   Because, lately, I've been lonely.   I shouldn't because I know our Lord is always with me and shall never forsake or abandon me, but it was good for me to hear others talk about their journeys thus far.  

Mom has had a rough morning.  I cried like a baby last night so I guess we are even now.  

The doctors assistant came in first and went over my medical history and did a series of neurological tests.   I told them that they were just one of many physicians training me to successfully pass a field sobriety test if intoxicated.   That was amusing for everyone, but I swear I take one every time I see a new doctor.   I understand it's because I just had brain surgery and they are just checking.   It's just so funny to me.    I passed it by the way.  

Next, I met with Dr. Glisson.  She felt Tarceva is a very effective systemic therapy that may shrink the tumor  if we have a curative intent.   She believes, as I do, that we should be aggressive but needs more information about the staging of the cancer in my mediastinum (area containing the heart).   

Therefore, I am going to need a Bronchoscopy for staging.  Before this is done, I am required to have a pulmonary consult, repeat CT scan and chest x-ray (scheduled for Wed.), pulmonary function test, and meet with a surgeon and radiation specialist.   The bronchocopy will stage the mediastinum, which pretty much dictates my treatment plan and if surgery is possible.

She did mention a clinical trial that I would be good for.  

After asking if I could be cured, she did say yes.   But, she followed with something to the effect of "even with the resection of the cancer in the lung (if it's at all possible), there is a 20% 5 year survival rate at that point".    

20% is better than 2%.  So, more waiting for appointments and more tests.   

Basically, it's in God's hands and there is nothing I can do about any of it, just have Faith.   Faith that the Lord will heal me, Faith that I will be there for Karley as she grows up, Faith that this disease will leave my body because Jesus paid for my healing over 2,000 years ago.  

In the meantime, as I await, I'll sit here and pull the stitches out of my head from the brain surgery in November.   Pretty gross huh?  It's ok, don't worry, one of the MD Anderson surgeons said it was okay.

I'll let you all know anything as I find it out.....

Matthew 19:26

Houston - here we come

Well, mom and I are waiting here at the airport. It's been a rough morning. I'm really missing Karley.

Last night, while we were talking on Skype, she held up several sweet drawings she made for me. But the last one said, "mommy, I hope you make it. If you don't make it, I will still love you".

I asked her what she meant by that, knowing deep down I knew the answer. She gave me the answer I was hoping I was wrong about. I told her I was going to do everything I could to make it and no matter what happens I know she loves me.

God has to give me the strength to deal with this. I'm praying very hard right now. Each day I'm away from her is tearing me apart. She is the light of my life and at 7 should not have to worry about whether her mommy will live or die. It's not fair for her. I never wanted this for her.

I pray that the good Lord give me strength today, because it is starting out to be a tough one. I only want the best for my girl. I don't want to hurt her with my illness. My heart is breaking, I need prayers and strength.

I'm sorry this isn't such a positive blog, everyone is entitled to a breakdown day I guess.

I pray to you, Lord, give MD Anderson the wisdom and power to cure me so I can serve you longer on this earth by attesting to your true power and love and also raise my daughter with this same knowledge. Amen


- Posted using BlogPress from my iPhone

Location:Atlanta airport

The Gamma Knife

Yesterday I went under the Gamma Knife at Piedmont.   For those who are not familiar, Gamma Knife Radiation, below is an explanation from Mayo Clinic:

In gamma-knife radiosurgery, specialized equipment focuses as many as close to 200 tiny beams of radiation on a tumor or other target. Although each beam has very little effect on the brain tissue it passes through, a strong dose of radiation is delivered to the site where all the beams meet.

The precision of gamma-knife radiosurgery results in minimal damage to healthy tissues surrounding the target and, in some cases, a lower risk of side effects compared with other types of radiation therapy. Also, gamma-knife radiosurgery is often a safer option than is traditional brain surgery.

I will not lie, this was very painful.  They put this heavy, metal square-shaped, piece of equipment over my forehead.   Gave me 4 shots in the head to numb it, then screwed the equipment into my head.  Two screws in the forehead, two in the back..   They used this equipment to hold my head perfectly still in the radiation machine so only the targeted spots would be hit.

Before the procedure began, I had to have an MRI. The good news:  There was no evidence of remaining cancer in my brain!   That means the cancer, as far as we know, is just remaining in my right lung and lymph nodes therein. 

After the MRI, the radio-surgeon, neurosurgeon, and physicist sat down and came up with a plan as to how to treat the cavity to kill anything they cannot see in the MRI and treat the whole cavity.  It was going to take 4 rounds.  They clamped my head into what they call the "couch" each time while I was lying down.  Then, it rolled me into the radiation machine for about 8 minutes.  Once done, they removed the metal square piece of equipment from my head by unscrewing it.

That is when the pain began.  Burning and blood running down my face.  I don't cry easily, but I was balling my eyes out.  I have two holes above the end of each eyebrow.   Luckily, I have some Loratabs, more anti-seizure meds, and some steroids.  I had these after the craniotomy too.  However, I don't think I was in this much pain then, probably because I slept so much after and during.  I was awake during and after this entire procedure.

But, it's over now.  My head will heal and the pain will go away.   So, things went well!  Thank you prayer warriors!   And thanks to all of you that rented a movie for me last night (Amanda, Reggie, Mandy, Brad, Sam, Poppy) and stayed and watched it while I fell asleep.  LOL!  I'm so sorry!

Well, off to Houston Sunday.  God is great and results are good so far.   So please, keep the prayers coming, because they are working.   The odds are still terrible, so we need continuing prayers to beat those odds!  I have so much to live for and with Him, this is possible!  

Matthew 19:26

Merry Christmas & Happy New Year

Christmas was great!  Karley stayed with me Christmas Eve and we went to John's Christmas day (after opening her gifts from Santa at my place).  She got everything she wanted....Kindle Fire from Mee Maw, Furbee from Grandmama, a remote control helicopter from Daddy, doll horse from Granddaddy, doll bike from Aunt Brookie, and Santa got a bunch of Beiber stuff.

John & Karley gave me a beautiful diamond cross and a stuffed animal lamb to sleep with in Houston.  And, an old acquaintance from high school, whom I now consider a friend, sent me some pretty inspirational reading materials (thanks Sean!)  My lil sis gave me a custom made memory book, mom and dad are financially helping me (which is more than enough), Stephen gave me some gift cards to finally go by myself some clothes.  And so many others have offered to help me with anything I need, which is amazing!

 During the day on Christmas Eve, she even got to go to The Cloister at Sea Island to visit with Santa with her friend Bella.  Thanks Deena!

A few days after Christmas we went to Nemours again to follow up on her right ear, which still has a hole in the right eardrum.   We will have to make a decision in June whether or not to have another surgery to try and close it again.   Hopefully it will close on its own.

Finally, Karley and I made the trip to Atlanta on 12/30.   She stayed awake the ENTIRE trip.  

She went to her first NYE party at Brad and Mandy's house.  She claimed it was the "best party she had ever been too".  She had a blast!  So, that made me super happy!  It was basically the same group of friends (with the exception of a few) that were there for me right out of the hospital.  Reggie bought Karley a pretty cool present that Mandy and Aunt Brook played with the most.....funny!

Amanda, Karley, Reggie, and I left around 10 pm to be safe on the road and Karley fell asleep at 11:45....so close!!!!

As you can see, Karley has no problem fitting in.

Well, my baby left today and now I'm so very sad.   It's going to be about 2 1/2 weeks before I see her again, which is the longest time ever.  I'm even going to miss her birthday for the first time ever.


The end of the year, for me, symbolized a new beginning, the beginning of our fight.  Tomorrow I have the Gamma Knife and Sunday off to Houston.

So, this will be the last blog for a while that isn't based on the fight.  I've had a wonderful holiday season and was so blessed to spend so much time with my baby girl and my friends and family.  I'm surrounded with love (both in SSI and Atlanta) and realize how blessed I am each day.   Thank you to everyone who donated to the fund lil sis set up for me.

Also, thank you for all of the prayers, please don't stop,  I need them very much.

I'll update after the Gamma Knife and will continue to update regularly once we get out to MD Anderson.  My faith is strong and I have so much to live for, I will not give up.

Phil 4:13